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.
By Matthew McKenzie – Carer & Chair of the National Ethnic MH carer Forum
The June 2026 National Ethnic Mental Health Carer Forum brought together carers, NHS Trusts, researchers, voluntary organisations and mental health professionals from across England to discuss one shared ambition improving mental health services through genuine co-production with ethnic minority carers.
Matthew reminded delegates that carers develop expertise through lived experience. Supporting a family member with severe mental illness means navigating NHS services, social care, benefits systems and advocacy. These experiences provide knowledge that cannot be learned through textbooks alone.
Opening Presentation
Matthew McKenzie
The Importance of Co-production
Forum Chair Matthew McKenzie opened the meeting by welcoming carers and professionals from across England and reflecting on more than a decade of leading the National Ethnic Mental Health Carer Forum.
He explained how the forum has evolved alongside the NHS Patient and Carer Race Equality Framework (PCREF), providing an increasingly important national platform for ethnic minority carers to influence mental health services.
A recurring theme throughout the presentation was the internationally recognised principle:
“Nothing About Us Without Us.”
He explained that this principle has guided disability rights and patient involvement movements for many years and remains just as relevant today for carers supporting loved ones with serious mental illness. Family carers often spend years navigating mental health services, social care systems and community support, developing valuable knowledge through lived experience that professionals alone cannot acquire. This expertise is especially important for carers from minority ethnic communities who may also encounter cultural misunderstandings, language barriers, discrimination or unequal access to services. Matthew argued that services cannot fully understand these challenges without involving the people who experience them every day. He encouraged carers to recognise that their experiences are not simply personal stories but a form of expertise that should be valued equally alongside professional knowledge when designing, reviewing and improving services.
The presentation concluded with a powerful call for organisations to move beyond consultation towards genuine partnership working. Matthew explained that when co-production is absent, services risk misunderstanding community needs, developing policies that fail to reflect lived experience and missing opportunities to reduce long-standing inequalities. Conversely, meaningful engagement enables carers to become active partners in service improvement, helping organisations build trust with communities, improve cultural responsiveness and design services that are accessible to everyone.
He also highlighted complementary approaches, including the Triangle of Care, Open Dialogue, cultural competence and shared decision-making, all of which reinforce the importance of collaboration between professionals, service users and carers. Matthew ended by encouraging every organisation represented at the forum to ensure that diverse voices are heard throughout the decision-making process, not simply those that are easiest to reach. His closing message resonated throughout the rest of the meeting: meaningful change begins by listening, respecting lived experience and ensuring that carers have a genuine seat at the table whenever mental health services are being designed or improved.
Q&A Highlights
Q: Why is co-production particularly important for ethnic minority carers?
Because carers from minority communities often experience additional barriers including discrimination, cultural misunderstandings and language challenges. Their lived experience helps services recognise issues that routine data alone cannot identify.
Q: What happens when services fail to co-produce?
Participants suggested services become “them and us” organisations where carers feel excluded, policies fail to meet community needs and trust declines.
Bradford District Care NHS Foundation Trust
Bronte Dines-Allen
Bronte Dines-Allen, Reducing Health Inequalities Lead at Bradford District Care NHS Foundation Trust, provided an inspiring overview of the Trust’s journey in implementing the Patient and Carer Race Equality Framework (PCREF). Introducing herself not only as a senior NHS leader but also as someone with lived experience as a family carer supporting her mother with mental ill health, Bronte spoke passionately about the importance of understanding services from both professional and personal perspectives.
She described Bradford as one of the most culturally diverse areas in England, with more than 150 languages spoken across the district and a population representing a wide range of ethnic communities. This rich diversity presents both opportunities and responsibilities for healthcare providers, requiring services to continually adapt, listen and ensure that care is culturally responsive and accessible to everyone. Bronte explained that Bradford’s approach to PCREF has been built around openness and transparency, with the Trust publishing annual progress reports and equality data to demonstrate both achievements and areas where further improvement is needed.
A major focus of Bronte’s presentation was the Trust’s recent “Amplifying Voices” event, which brought together NHS staff, voluntary and community organisations, chaplaincy services, neighbouring NHS Trusts and people with lived experience to discuss health inequalities and mental health care. Rather than concentrating solely on statistics, the event was designed to explore the stories behind the data, recognising that every figure represents a real person, family or community whose experiences deserve to be heard.
Participants shared personal accounts of navigating mental health services, building trust with professionals, overcoming barriers related to culture and language, and the importance of feeling genuinely listened to. Bronte stressed that collecting feedback is only meaningful if organisations demonstrate how that feedback influences future decision-making. One of the most encouraging outcomes of the event was the commitment from senior leaders that the experiences shared would directly inform the Trust’s refreshed organisational strategy, ensuring that health equity and reducing inequalities remain central to future service development.
Looking ahead, Bronte outlined several priorities that will continue to strengthen Bradford’s PCREF programme. These include expanding cultural competency training for staff, increasing awareness of PCREF throughout the organisation, developing educational resources that encourage conversations about race equality, and creating further opportunities for carers to contribute to service improvement.
She acknowledged that the Trust is still early in parts of its journey, particularly in strengthening engagement with carers and improving mechanisms for gathering feedback, but emphasised that genuine progress comes through honesty, collaboration and a willingness to learn from others. During the discussion that followed, delegates praised Bradford’s transparent approach and shared examples of similar work taking place across other NHS Trusts, reinforcing one of the key messages of the forum that improving mental health services is a shared national endeavour. Bronte concluded by reiterating that sustainable change depends upon building trusting relationships with communities, valuing lived experience as expertise and ensuring that carers remain active partners in shaping the future of mental health care.
Q&A Highlights
Q: What specific work is being undertaken with older adults?
Bronte acknowledged that Bradford is still developing this area and welcomed suggestions from carers and other Trusts, emphasising the importance of learning nationally.
Q: How is co-production influencing your work?
The event itself was co-designed with voluntary sector partners and accountability groups, ensuring community voices shaped both the programme and future priorities.
Q: How do you collect meaningful feedback?
Bradford continues improving its feedback systems following technical challenges and is exploring better ways of gathering and acting on carers’ experiences.
Research Presentation
Dr Meghana Kamble
Families of Children with Disabilities: Perspectives from South Asia
Dr M. Kamble from the University of East Anglia presented an insightful overview of an international research project exploring the experiences of South Asian families caring for children and adults with intellectual and developmental disabilities.
The study spans the United Kingdom, India, Sri Lanka and the United States, bringing together the voices of parents, siblings, carers, people with disabilities and professionals to better understand the challenges faced by families across different cultural settings. Dr Kamble explained that despite increasing awareness of health inequalities, the experiences of many ethnic minority families remain underrepresented in both research and service development. The project seeks to address this gap by examining not only access to services but also how cultural beliefs, family dynamics and lived experience influence the support that families receive. Underpinning the research is the principle of family-centred care, recognising that supporting one individual also means understanding and supporting the wider family network that cares for them.
Drawing on early findings from interviews, focus groups and surveys, Dr Kamble highlighted several recurring themes that resonated strongly with delegates at the forum. Families consistently reported difficulties accessing culturally appropriate services, navigating complex health and social care systems, and finding professionals who understood the realities of their lived experience. Stigma, social isolation and language barriers were frequently identified as obstacles that prevented families from seeking support at an early stage.
One particularly interesting finding challenged common assumptions about South Asian communities. While it is often believed that extended family networks naturally provide substantial support, many participants described relying far more heavily on peer support groups, community organisations and voluntary sector services than on relatives. Dr Kamble also observed that outside Europe many people do not identify themselves as “carers” in the formal sense; instead, they simply see themselves as sons, daughters, brothers or sisters fulfilling their family responsibilities. This distinction has important implications for how services identify and engage people who may be eligible for support but never recognise themselves under the label of “carer.”
The discussion following the presentation explored how research findings can influence future policy and practice. Delegates highlighted the need for clearer information about carers’ rights, improved communication with communities and greater transparency from statutory services about the support that is available. Several participants emphasised that trust can only be built when organisations consistently involve communities in decision-making and demonstrate that lived experience genuinely shapes service improvements. Dr Kamble agreed that while systems and policies are important, individual professionals often make the greatest difference by taking the time to guide families through complex services and helping them understand their rights. Looking ahead, the research team plans to share its findings through publications, webinars, community engagement events and partnerships with organisations across the UK and internationally. The presentation served as a powerful reminder that reducing inequalities requires not only better research but also culturally responsive services that recognise and value the diverse experiences of families from every community.
Q&A Highlights
Q: How will the research findings be shared?
The project plans to publish papers, webinars, newsletters and community engagement events, with researchers keen to work alongside carers in disseminating findings.
Q: How can services better reach ethnic minority carers?
Participants emphasised:
clearer information about rights
better community engagement
trusted local organisations
simpler access to support
transparent communication.
Q: Should organisations rethink the word “carer”?
Yes.
Several delegates suggested that many people never identify with the label “carer,” meaning they may never seek available support. Researchers agreed this requires further exploration.
Nottinghamshire Healthcare NHS Foundation Trust
Ashley Bertie
Accelerating PCREF Implementation
Ashley Bertie, Associate Director for Participation, Co-production and Patient Care Experience at Nottinghamshire Healthcare NHS Foundation Trust, provided an informative update on the Trust’s progress in implementing the Patient and Carer Race Equality Framework (PCREF). Ashley explained that although the Trust recognises there is still much work to do, PCREF has become a strategic priority across the organisation and is helping to drive meaningful cultural change.
Since taking up his role, one of his key objectives has been to accelerate implementation by embedding race equality, co-production and lived experience into the Trust’s everyday work. He described how the organisation has established a comprehensive governance structure, including a PCREF Steering Group chaired by the Chief Nurse, supported by specialist groups focusing on health inequalities, workforce development and lived experience. Importantly, carers, patients, Equality, Diversity and Inclusion (EDI) ambassadors and voluntary sector representatives are all involved in shaping the Trust’s work, demonstrating a commitment to partnership rather than top-down decision making.
Ashley emphasised that improving mental health services cannot be achieved by the NHS working in isolation. A significant part of Nottinghamshire Healthcare’s strategy involves developing strong partnerships with voluntary and community organisations, local authorities, Integrated Care Boards and other NHS Trusts.
He explained that many people from ethnic minority communities have longstanding relationships with trusted community organisations but may be reluctant to engage directly with statutory services due to previous negative experiences or cultural barriers. As a result, the Trust is increasingly taking its engagement activities into local communities, holding events in community centres, places of worship and neighbourhood venues where people already feel comfortable and supported. Alongside this community-based approach, the Trust is investing in cultural capability training for staff, improving transparency through publicly available equality dashboards and developing a new Lived Experience Advisory Group to ensure that carers and service users play a central role in monitoring progress and influencing future service improvements.
Looking ahead, Ashley outlined an ambitious programme of work designed to embed PCREF throughout the organisation over the coming years. Funding secured through NHS England will support a wide range of initiatives, including cultural awareness workshops, staff development programmes, community capacity-building projects and expanded opportunities for people with lived experience to influence recruitment, service design and quality improvement.
One of the Trust’s key ambitions is to ensure that at least 80 per cent of its workforce receives training on the principles of PCREF, helping staff to better understand health inequalities and deliver more culturally responsive care. Throughout his presentation, Ashley reinforced the importance of meeting communities where they are, listening carefully to lived experience and building relationships based on trust rather than assumptions. His presentation reflected the wider theme of the forum: that lasting improvements in mental health services depend upon genuine collaboration between professionals, carers, service users and the communities they serve.
Q&A Highlights
Q: Why are community partnerships so important?
Ashley explained that local organisations often have trusted relationships with communities that NHS services may not yet possess.
Q: How will Nottinghamshire involve carers?
Through a new Lived Experience Advisory Group, strengthened co-production arrangements and wider involvement in service design, recruitment and evaluation.
King’s College London
Ida Doherty
Supporting Ethnic Carers in South West London
Although this presentation formed part of the meeting agenda, discussion focused on ongoing work supporting ethnic carers across South West London through research and partnership working. The emphasis was on better understanding carers’ experiences and ensuring that future services are informed directly by those experiences.
More on her talk will be for the next forum due to time.
Looking Ahead
The National Ethnic Mental Health Carer Forum continues to provide a valuable national platform where carers, researchers, NHS Trusts and community organisations can learn from one another.
The discussions demonstrated that progress is being made through PCREF, research and community partnerships, but also recognised that significant challenges remain.
Moving forward, success will depend on maintaining the principles that underpinned every presentation:
listening before acting
valuing lived experience
strengthening trust
improving cultural responsiveness
ensuring carers remain genuine partners in shaping mental health services.
The forum closed with networking and an invitation for organisations across England to continue sharing good practice, supporting one another and working collectively to reduce inequalities in mental health care.
Written by Matthew McKenzie, Speaker, Carer, Campaigner and Poet
As part of Carers Week 2026, I had the privilege of travelling to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, carers’ organisations, NHS representatives, local authority leaders, health professionals, community groups and carers from across East Sussex to discuss the realities of caring and identify ways to improve support for unpaid carers.
The event was hosted by Dr Neil Churchill, Chair of Care for the Carers, who guided the day’s discussions and emphasised the vital role carers play in society. Throughout the day, carers shared their personal stories, experiences and recommendations directly with decision-makers and service providers.
This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.
Opening Remarks – Dr Neil Churchill
Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.
He highlighted several key challenges currently facing carers:
• Rising financial pressures and cost-of-living concerns. • The growing number of carers leaving employment due to caring responsibilities. • Increased risks of poor physical and mental health among carers. • Social isolation and loneliness experienced by many carers. • Growing concerns around carer burnout.
Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.
A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.
Carer Stories and Lived Experience
One of the most powerful aspects of the event was hearing directly from carers themselves.
Miles Bing – Caring Through Dementia
The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.
Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.
He spoke about:
• The long-term impact of dementia on families. • The challenges of accessing services in rural areas. • The lack of coordination between health and social care systems. • The practical and emotional burden placed on carers.
Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.
Young Carers – Julia and Elsie
The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.
Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.
Their stories demonstrated:
• The hidden nature of young caring responsibilities. • The emotional impact caring can have on children and young people. • The importance of early intervention and support. • The value of dedicated young carers services.
Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.
The standing ovation they received reflected the courage and honesty with which they shared their experiences.
Round Table Discussions
Following the morning speakers, attendees participated in facilitated round table discussions.
These conversations focused on:
• The biggest issues facing carers over the next six months. • Practical actions that could help carers in their caring role. • Barriers to accessing support. • Positive examples of support that should be expanded.
Several common themes emerged from these discussions:
Earlier Identification
Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.
Access to Information
Attendees highlighted how difficult it can be to find accurate and timely information about available support.
Financial Pressures
Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.
Mental Health and Wellbeing
Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.
Speaker sessions resumes
Diverse Communities and Caring
A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.
She discussed additional challenges experienced by carers from minority communities, including:
• Language barriers. • Cultural differences. • Social isolation. • Displacement trauma. • Immigration-related issues. • Financial and emotional dependency.
Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.
She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.
Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.
My Presentation – A Carer’s Journey
I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.
One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.
However, over time I found myself:
• Coordinating care. • Supporting hospital admissions and discharges. • Managing appointments. • Advocating with professionals. • Navigating complex systems. • Supporting multiple family members simultaneously.
I spoke about how difficult it can be when carers are not listened to or involved in important decisions.
I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.
One of the central themes of my presentation was carers’ rights.
I encouraged carers to:
• Identify themselves as carers. • Seek support from local carers organisations. • Request carers assessments. • Learn about their rights. • Participate in co-production and service improvement. • Share their experiences to help reduce stigma.
To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.
Afternoon Reflections and Future Priorities
The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.
Discussions focused on:
• Improving identification of carers. • Supporting carers before crises occur. • Encouraging carers to access support services. • Learning from positive experiences of care. • Strengthening partnerships between carers and professionals.
Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.
Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.
Key Messages from the Day
Several important messages emerged consistently throughout the event:
Carers Need Recognition
Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.
Carers Need Practical Support
Information, respite, emotional support and financial advice remain essential.
Carers Must Be Involved
Carers are experts in the lives of the people they support and should be treated as partners in care.
Young Carers Need Protection
Children and young people with caring responsibilities require dedicated support and opportunities to thrive.
Communities Matter
Strong local networks can help reduce isolation and improve wellbeing.
Prevention Is Better Than Crisis Management
Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.
Conclusion
The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.
Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.
Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.
As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.
The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.
Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.
On Wednesday 3 June 2026, colleagues from all eight London Mental Health Trusts, alongside carers, service users, community organisations, researchers, regulators and system leaders, gathered at ISH Venues in central London for the Pan London Patient and Carer Race Equality Framework (PCREF) Conference.
Chaired by Erica deti from North East London NHS Foundation Trust (NELFT), the conference provided a unique opportunity to showcase progress, share learning and strengthen London’s collective commitment to race equity within mental health services.
The conference was built around the principle that advancing race equity requires both organisational commitment and meaningful partnership with people who use services, carers and communities. Throughout the day, speakers challenged delegates to move beyond discussion and towards action, recognising that the inequalities experienced by racialised communities within mental health services remain one of the most significant challenges facing the NHS.
South West London and St George’s Mental Health NHS Trust
The first trust presentation was delivered by Amdad Ibrahim, Associate Director of Health Inequalities, and Dr Mona Dhesi, Consultant Forensic Psychologist and Associate Medical Director at South West London and St George’s Mental Health NHS Trust. Their presentation provided one of the clearest examples of how PCREF can be fully integrated into organisational strategy. Beginning with an explicit acknowledgement that racism exists within healthcare organisations and wider society, they demonstrated how their trust had used this recognition as the foundation for meaningful action.
The speakers outlined a comprehensive anti-racism programme linking governance, workforce development, community engagement and service transformation. Race equity has been embedded into business planning, leadership accountability and quality improvement processes, supported by cultural capability programmes, anti-racism steering groups and health equity assessments.
Their presentation demonstrated how PCREF can become part of the organisational DNA of a trust rather than a standalone initiative and provided a practical blueprint for others seeking sustainable implementation.
1. Commitment and Foundations
The Trust began by establishing a clear organisational commitment to becoming an anti-racist organisation. This commitment is supported through a range of strategic frameworks and governance structures, including the Trust’s Anti-Racism Framework, Board Equality, Diversity and Inclusion objectives, and the implementation of the Patient and Carer Race Equality Framework (PCREF).
Speakers emphasised that meaningful progress begins with leadership acknowledging that racism exists within healthcare systems and taking responsibility for addressing it. This commitment has been reinforced at Board level and incorporated into wider organisational priorities to ensure race equity remains visible and accountable.
2. Capability and Awareness
Recognising that sustainable change requires learning and reflection, the Trust has invested heavily in developing staff awareness and cultural capability. This includes initiatives such as:
White Allies Programme
Anti-Racism Hub and Reflective Spaces
Equality, Diversity and Inclusion Champions
Cultural Capability Training
These programmes create opportunities for staff to develop a deeper understanding of race, culture, privilege and inequality while providing safe spaces for reflection and discussion. The aim is to move beyond awareness and support staff to actively challenge inequity within their daily practice.
3. Embedding Anti-Racism into Practice
SWLSTG has focused on ensuring anti-racist values are embedded within decision-making processes and clinical practice rather than existing solely within training programmes.
Key areas of work include:
Embedding anti-racist values into organisational behaviours
Increasing diversity within leadership and decision-making structures
Delivering targeted race equity interventions
Using Health Equity Impact Assessments to inform service development
The Trust highlighted how race equity considerations are now being incorporated into service redesign programmes, policy development and clinical pathways, ensuring that decisions are assessed for their potential impact on different communities.
East London NHS Foundation Trust (ELFT)
Advancing Equity in All That We Do: ELFT Strategy 2026–2031
Presented by Carrie Sissons, Deputy Director of Integrated Care, East London NHS Foundation Trust shared how race equity and inclusion have been embedded at the heart of the Trust’s new 2026–2031 Strategy. Rather than developing a strategy behind closed doors, ELFT undertook an extensive engagement programme designed to ensure that the voices of service users, carers, staff and communities directly influenced the Trust’s future direction.
Carrie explained that the strategy was developed during a period of significant challenge for health and care services, but also a period of opportunity. The Trust recognised that if it was to improve outcomes for the diverse communities it serves across East London, Bedfordshire and Luton, equity could not be treated as a separate programme of work. Instead, it had to become a core principle underpinning every decision, every service and every improvement initiative undertaken by the organisation.
Building the Strategy Through the “Big Conversation”
A major feature of the strategy development process was the Trust’s extensive engagement exercise known as the “Big Conversation.” This programme was designed to ensure that the final strategy reflected the experiences, priorities and aspirations of the people who use and deliver services.
What People Told ELFT
One of the strongest messages emerging from the Big Conversation was the importance of equity. Participants consistently identified inequalities in access, experience and outcomes as issues that required sustained attention and action.
The engagement process highlighted several key themes:
Equity as a priority for action.
Equity for specific communities and groups.
Equity as a current and future risk.
Equity through co-production and lived experience.
Equity through population health and prevention.
Equity for staff as well as service users.
Equity through digital inclusion.
Equity as an essential part of value, not separate from it.
Carrie explained that these findings reinforced the need for equity to be visible throughout the Trust’s strategic objectives and operational plans. Participants wanted to see measurable action rather than broad commitments, with a focus on understanding and addressing disparities experienced by different communities.
The ELFT Strategy 2026–2031
The new strategy builds upon ELFT’s existing values and commitment to high-quality care. Serving approximately 1.8 million people across East London, Bedfordshire and Luton, the Trust recognised that reducing inequalities must remain central to its future ambitions.
The strategy identifies four broad priorities for the next five years:
Improve the quality and experience of care.
Make ELFT a great place to work.
Advance equity in all that we do.
Work with partners and communities to improve lives.
Of these priorities, the commitment to advancing equity was particularly relevant to the themes of the PCREF conference.
Priority Three: Advance Equity in All We Do
Carrie described this priority as a commitment to ensuring that equity becomes embedded within everyday practice rather than being treated as a specialist programme.
By 2031, ELFT aims to ensure that:
Teams routinely analyse access, experience and outcomes by population group.
Services take action when disparities are identified.
Progress continues against PCREF commitments.
The Trust’s Anti-Racism Plan and Charter are actively implemented.
Equity and inclusion are strengthened across the workforce.
Inequalities experienced by racialised communities are reduced.
The strategy recognises that data alone is not enough. Equity must be considered throughout service design, quality improvement, workforce development and organisational decision-making.
West London NHS Trust
Presented by Debbie Best (PCREF Lead), Natalie Mark (Living Experience PCREF Lead) and Dr Anne Aiyegbusi, West London NHS Trust delivered one of the most powerful and thought-provoking presentations of the conference. Their session focused on racial trauma, exploring how racism affects patients, carers and staff, and how organisations can create safe spaces to acknowledge, understand and respond to those experiences.
The presentation was rooted in the recognition that racial inequalities remain deeply embedded within mental health services. The team explained that their work developed in response to persistent concerns around disproportionate referrals, detention rates and restrictive interventions experienced by racialised communities. They also highlighted how mistrust of services and experiences of re-traumatisation continue to affect people’s willingness to engage with mental health support. Importantly, they stressed that racial trauma is not only experienced by service users but also by carers and staff, many of whom continue to navigate systems that can reproduce inequity.
Why This Work Matters
West London NHS Trust identified several key issues that informed the development of their racial trauma programme:
Disproportionate rates of referrals and detention among racialised communities.
Higher levels of restrictive interventions within mental health pathways.
Mistrust of services due to previous negative experiences.
The risk of re-traumatisation through interactions with healthcare systems.
The impact of racism on patients, carers and staff alike.
A particularly striking message from the presentation was that many racialised staff attending the workshops were not learning about racial trauma as a new concept. Instead, they were reflecting on experiences that formed part of their everyday reality. This observation reinforced the importance of creating environments where these experiences can be discussed openly and safely.
Co-produced Learning Spaces
The racial trauma workshops were developed through a co-production approach involving Debbie Best, Natalie Mark and Dr Anne Aiyegbusi, a forensic psychotherapist, group analyst and registered nurse who has published extensively on racial trauma. Together they designed reflective learning spaces where participants could explore difficult but essential conversations around race, identity and mental health.
The workshops encouraged participants to discuss:
Trust, power and emotional labour.
Racialised assumptions within healthcare.
Barriers to culturally safe care.
Experiences of racism in professional and personal settings.
Organisational responsibilities in responding to racial trauma.
Feedback from participants demonstrated the impact of these conversations. Attendees reported that hearing people’s lived experiences brought the issues to life in ways that data alone could not achieve. Many described the workshops as challenging but necessary, with one participant stating that conversations about racial trauma are essential even when they are uncomfortable.
Wider PCREF Implementation at West London NHS Trust
Alongside the racial trauma work, the presentation highlighted wider progress being made through PCREF implementation across the Trust.
Key achievements included:
Establishing PCREF leadership, steering groups and governance structures.
Increasing the number of PCREF leads and lived experience members.
Delivering Trust-wide PCREF awareness events.
Running community listening events and engagement activities.
Developing a Cultural Competency Framework and tailored action plans.
Creating co-produced communications led by patients and carers.
Improving ethnicity data collection and reporting systems.
Working with specialist racial trauma consultants to strengthen organisational understanding.
Particularly noteworthy was the emphasis on co-production. Patients and carers were not simply consulted but actively involved in shaping communications, governance structures, learning programmes and strategic priorities. This demonstrated a commitment to ensuring that those most affected by inequalities have a meaningful voice in driving change.
Key Learning from West London NHS Trust
The West London presentation demonstrated that addressing racial inequalities requires more than policy changes alone. It requires organisations to create spaces where difficult conversations can happen safely, where lived experience is valued as expertise and where learning leads directly to action.
Their work showed that racial trauma is not solely an individual experience but an organisational challenge that requires leadership, accountability and sustained commitment. By combining co-production, cultural competency, workforce development and organisational reflection, West London NHS Trust is helping to create the conditions for more equitable and culturally safe mental health services.
Oxleas NHS Foundation Trust
Reducing Inequalities in Restrictive Practice: From Data to Action
Presented by Oxleas NHS Foundation Trust, this session focused on reducing inequalities in restrictive practice through the lens of the Patient and Carer Race Equality Framework (PCREF). The presentation explored how data, lived experience, trauma-informed care and practical service improvements can work together to reduce the use of restraint, seclusion and restrictive interventions while addressing racial disparities.
The presenters explained that restrictive practices are not experienced equally across all communities. Evidence shows that people from some racialised groups are more likely to experience restrictive interventions, making this both a safety issue and a race equity issue. Oxleas therefore sought to identify practical actions that could improve care while simultaneously reducing inequalities.
Listening to Staff and Stakeholders
As part of their PCREF work, Oxleas engaged staff, service users and stakeholders to identify priorities for change. The feedback was grouped and ranked to establish the strongest starting points for improvement.
The consultation identified two immediate workstreams:
Debrief and Escalation
Trauma-Informed Care
The presentation emphasised that participants did not ask for abstract policy changes. Instead, they identified practical improvements that could be implemented directly within services.
Highest-Ranked Priorities
The most frequently identified priorities included:
A key message from the slide was that stakeholders wanted changes that would directly affect day-to-day care, staff behaviour and patient experience.
Workstream One: Debrief and Escalation
The first workstream focused on reducing escalation in the moment and improving learning after incidents occur.
The framework was organised into three stages:
Before Escalation
Staff are encouraged to:
Pause before escalating situations.
Ensure one lead staff member takes responsibility.
Consider alternatives earlier.
Use an equity prompt before moving to hands-on interventions.
The emphasis was on slowing decision-making enough to ensure staff are responding to the person’s needs rather than reacting automatically.
During Escalation
The presentation highlighted the importance of:
Clear staff roles.
Defined decision-making thresholds.
Safety scanning.
Choosing the least restrictive option available.
Clear documentation of rationale.
Protecting clinical judgement while maintaining accountability.
The objective is to ensure restrictive interventions are only used when absolutely necessary and are proportionate to the situation.
After the Incident
Learning after incidents was considered equally important.
Actions included:
Joint staff and patient learning.
Independent facilitation where possible.
Advocacy and peer support.
Reviewing and updating care plans.
The focus was not simply on recording incidents but on understanding what happened and preventing repetition.
Next Steps
The presentation concluded with a clear action plan for the coming period.
Planned Actions
Agree a Trust-wide escalation and post-incident learning standard.
Begin testing the “Pause Before Escalation” approach on selected wards.
Finalise a Trust Trauma-Informed Care (TIC) protocol and minimum training standard.
Strengthen dashboard reporting and improve protected-characteristics data quality.
Embed lived experience into the design and review of changes.
These actions reflect the Trust’s commitment to moving from discussion to implementation.
Learning Across London
The presenters also highlighted the importance of collaboration across London’s mental health trusts.
Areas identified for collaboration included:
Common data definitions.
Co-produced interventions.
Trauma-informed escalation practice.
Culturally informed post-incident learning.
Peer review of ward-level improvement projects.
This reflected one of the key themes running throughout the conference: that race equity work is strengthened when trusts learn from each other rather than working in isolation.
North East London NHS Foundation Trust (NELFT)
North East London NHS Foundation Trust (NELFT) presented its PCREF work through the lens of national competencies, demonstrating how race equity can be embedded into everyday clinical practice rather than being treated as a standalone initiative. The presentation, delivered by Erica Deti, Patient and Carer Race Equality Lead, highlighted the importance of developing a workforce that is confident, culturally competent and able to respond effectively to the needs of diverse communities. NELFT emphasised that meaningful change requires organisations to move beyond awareness and into practical action, ensuring that race equity is reflected in leadership, service design and frontline care.
A key focus of the presentation was the development and implementation of national PCREF competencies, designed to support staff at all levels in understanding racial inequalities and their impact on mental health outcomes. Erica explained how these competencies help staff build the knowledge, skills and confidence needed to challenge inequity, engage meaningfully with service users and carers, and contribute to culturally responsive services. The Trust also stressed the importance of involving people with lived experience throughout this process, ensuring that learning is informed by real experiences rather than theoretical concepts alone.
The presentation reinforced the message that achieving race equity is a continuous journey rather than a destination. NELFT shared examples of how the Trust is embedding co-production, reflective practice and accountability into its approach, while encouraging staff to consider how their decisions influence patient experiences and outcomes. By focusing on workforce development, lived experience leadership and organisational learning, NELFT demonstrated how PCREF can act as a catalyst for long-term cultural change, helping to create services that are safer, fairer and more responsive to the communities they serve.
A second NELFT presentation was delivered from local community organisations and Project Zero. This session focused on partnership working with local barbershops, voluntary organisations and community groups as a means of improving engagement with racialised communities. The speakers described how trusted community settings can help bridge gaps between services and populations that may feel excluded from traditional healthcare pathways.
Carer Spotlight
Matthew McKenzie and PCREF Carer Poetry
One of the most powerful moments of the afternoon came during the Carer Spotlight, where carers used poetry to share personal experiences of supporting loved ones through mental health services. The session moved beyond statistics, policies and organisational frameworks to remind attendees of the human stories that sit behind every discussion about race equity, access and care. The poetry was delivered by Matthew McKenzie and fellow carers, creating a reflective and emotional space that grounded the conference in lived experience. Through spoken word and personal reflection, the audience was invited to consider what it truly means to care, advocate and persevere within systems that do not always recognise the voices of carers.
A recurring theme across the poems was the often invisible role of carers. Several pieces explored the emotional labour involved in supporting a family member through periods of crisis, while also navigating complex services and systems.
Here is the poem from Matthew McKenzie taken from his collaborative book (in development) – Unpaid, Unseen and Yet Unbroken
The poems highlighted feelings of exhaustion, responsibility and uncertainty, but also resilience and determination. Listeners heard about the challenges of balancing personal wellbeing with caring responsibilities, and the reality that carers frequently become experts in supporting their loved ones while receiving little recognition themselves. The poetry gave voice to experiences that are often hidden from formal reports and performance data, yet have a profound impact on individuals and families.
Another important theme was the need for genuine partnership between services, service users and carers. The poems reflected frustrations when carers felt excluded from conversations, ignored during decision-making or treated as outsiders despite their deep understanding of the person they support. At the same time, they celebrated examples of compassionate practice, where professionals listened, worked collaboratively and recognised carers as valuable partners in recovery. These reflections connected strongly with the wider messages of PCREF, reinforcing that co-production is most effective when carers are respected, included and treated as equal contributors rather than passive observers.
Central and North West London NHS Foundation Trust (CNWL)
Presented by J’nelle James, Acting Assistant Director of Culture and Equality, Diversity and Inclusion, Central and North West London NHS Foundation Trust (CNWL) showcased one of the conference’s most innovative examples of co-production through the Black Men’s Wellbeing Festival 2026. The presentation focused on how Milton Keynes Talking Therapies worked with Black men, community leaders and local organisations to improve engagement with NHS mental health services. Rather than expecting communities to come to services, CNWL demonstrated how services can go out into communities, build relationships and create spaces where conversations about mental health feel safe, relevant and culturally meaningful.
The presentation explained that the project began during Black History Month in October 2022, when Milton Keynes Talking Therapies hosted a free face-to-face wellbeing session for Black men at Stantonbury Health Centre. The event explored themes including racial trauma, stigma, family relationships, cultural influences and self-worth. What began as a single wellbeing session quickly revealed a significant unmet need within the community. Participants spoke openly about barriers to accessing support and the lack of culturally relevant mental health conversations, leading the team to recognise that a longer-term programme of engagement was needed.
CNWL emphasised that trust cannot be created through a single event or consultation exercise. Instead, trust is earned through visibility, consistency and genuine partnership. The Trust described a three-year journey of listening, learning and working alongside local communities, which ultimately led to the development of the Black Men’s Wellbeing Festival. The project became an example of how PCREF principles can be applied in practice by ensuring that communities are involved in shaping solutions rather than simply being consulted after decisions have already been made.
Building Trust Through Co-Production
A central message throughout the presentation was that “trust isn’t built overnight.” The festival emerged through a deliberate process of relationship-building and community engagement. CNWL outlined six stages that helped transform an initial wellbeing event into a large-scale community-led initiative.
The first stage focused on initial engagement, beginning with the October 2022 wellbeing session. Following this, the team moved into a listening and learning phase, hosting webinars, training sessions and community discussions to understand what Black men wanted from mental health services. Rather than assuming solutions, the Trust spent time listening to experiences and identifying priorities directly from community members.
The next stages involved meeting people in community spaces, strengthening relationships with local organisations and businesses, amplifying messages through trusted community networks and broadening engagement across Milton Keynes. The presentation highlighted that every stage was developed collaboratively with community partners, ensuring that ownership of the programme remained shared rather than NHS-led.
Key Stages of the Journey
Initial engagement through Black History Month wellbeing events.
Listening sessions and community conversations.
Presence at local community gatherings and celebrations.
Building partnerships with local organisations and businesses.
Using trusted networks to amplify messages.
Expanding engagement through media, events and outreach.
The Black Men’s Wellbeing Festival 2026
The culmination of this work was the launch of the Black Men’s Wellbeing Festival 2026, a community-led programme designed to improve access and engagement for Black men within mental health services. Running weekly between April and May 2026, the festival brought together clinicians, community leaders, lived experience speakers and local organisations to create open conversations about wellbeing, identity and mental health.
The programme tackled subjects that participants themselves had identified as important. Rather than focusing solely on clinical mental health conditions, the festival explored the wider social, cultural and personal experiences that influence wellbeing. This reflected a more holistic understanding of mental health and recognised that issues such as identity, masculinity, family expectations and discrimination all play an important role in people’s wellbeing.
The festival also demonstrated how NHS services can become more accessible when support is delivered in partnership with trusted community figures. By bringing together professionals and community leaders, CNWL created opportunities for conversations that may not otherwise take place within traditional healthcare settings.
North London NHS Foundation Trust
Equity and Health Inequalities Strategy 2026–2030: “Inclusion in Action”
North London NHS Foundation Trust presented its new Equity and Health Inequalities Strategy 2026–2030, centred on the theme of “Inclusion in Action.” The presentation highlighted the Trust’s ambition to embed equity into every aspect of organisational culture, leadership, workforce development and service delivery. Rather than treating equality and health inequalities as separate workstreams, the strategy positions inclusion as a fundamental principle underpinning better mental health outcomes, improved staff experiences and stronger communities. The Trust’s vision was summarised through the phrase: “Better Mental Health. Better Lives. Better Communities.”
A key theme throughout the presentation was the recognition that addressing inequalities requires action at both organisational and system levels. The strategy aligns with the Trust’s broader five-year organisational goals and is supported by the North London Way, Trust values, leadership framework and staff network structures. The presenters emphasised that lived experience, staff insight and community partnership have been central to shaping the strategy, ensuring that it reflects the realities of the diverse populations served across North Central London.
The presentation also highlighted the importance of shared accountability. Equity was presented not as the responsibility of specialist equality teams alone, but as a collective responsibility across leadership, clinical services, operational teams and partner organisations. Through this approach, the Trust aims to create sustainable cultural change while reducing inequalities experienced by both service users and staff.
Strategic Ambitions and Organisational Change
A major focus of the presentation was how the Trust intends to turn principles into practical action. The strategy builds upon existing organisational priorities while introducing a stronger and more explicit focus on equity and inclusion. The presenters described a framework that links the Trust’s strategic aims, leadership expectations, workforce culture and service improvement activity into a single coherent approach.
The strategy is closely connected to the work of the Staff Networks Alliance, which brings together a range of staff networks representing diverse communities and experiences. The Trust described these networks as essential partners in shaping policy, challenging inequalities and ensuring that organisational decisions are informed by lived experience. This collaborative model reflects a commitment to co-production and shared leadership rather than top-down decision making.
The presentation emphasised a set of organisational values that support inclusive practice, including visibility, accountability, compassion, collaboration and empowerment. These principles are intended to guide both staff behaviour and organisational decision-making. By embedding these values throughout the Trust, leaders hope to create a culture where inclusion becomes a routine part of everyday practice rather than a separate programme of work.
Building on Existing Foundations
The final section of the presentation focused on progress already achieved and the foundations that have been established to support future work. The Trust outlined a number of significant developments, including the creation of an Equality, Diversity and Inclusion (EDI) Programme Board, which provides governance and oversight for inclusion and health inequalities initiatives. This governance structure helps ensure that equity remains a strategic priority and is monitored at senior levels of the organisation.
The Trust has also introduced several initiatives aimed at strengthening accountability and supporting underrepresented groups. These include the launch of the Staff Networks Alliance, the development of anti-racism principles, positive action programmes, reciprocal mentoring opportunities and improvements in disability inclusion through the Reasonable Adjustments Passport scheme. The Trust reported achieving Disability Confident Level 2 status, reflecting progress in creating a more inclusive workplace environment.
Importantly, the presentation highlighted the implementation of the Patient and Carer Race Equality Framework (PCREF) as a key mechanism for advancing anti-racist practice and addressing inequalities within mental health pathways. Alongside embedding the North London Way as a shared organisational framework, the Trust views PCREF as a central component of its strategy for reducing inequities and improving outcomes. The overall message was that meaningful progress has already begun, but sustained effort, partnership and accountability will be required to achieve the ambitions set out in the Equity and Health Inequalities Strategy 2026–2030.
A recurring message from the closing discussion was that race equity remains everybody’s responsibility. While significant progress has been made, panellists acknowledged that much work remains. Delegates left with a renewed commitment to collaboration, stronger partnerships with carers and communities, and a shared determination to ensure that PCREF continues to drive meaningful and measurable change across London’s mental health services.
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.
The March session of the National Ethnic Mental Health Carer Forum brought together carers, researchers, NHS professionals and community organisations for a conversation that felt both familiar and urgent.
Chaired by Matthew McKenzie, the forum stayed rooted in what it does best: creating a national grassroots space where lived experience meets systems, and where difficult truths are not avoided.
The agenda reflected that balance clearly:
10:35 – Professor Saffron Karlsen (University of Bristol)
11:20 – King’s College London (Phoebe Averill & team)
11:50 – Parliamentary and Health Service Ombudsman
12:00 – Thomas Ince – Universal Care Plan
Racism and Mental Health: Naming What We Already Know
Professor Saffron Karlsen opened the forum with a presentation that didn’t just describe inequality it explained how it is produced, sustained, and experienced in everyday life.
Drawing on over 30 years of research, Professor Saffron Karlsen is a sociologist at the University of Bristol whose research examines how racism and social inequality affect health, particularly within ethnic minority communities.
she spoke about racism not as a single act or incident, but as something woven into the fabric of society. It operates quietly and persistently, through institutions, through policies, through media narratives, and through the ways people interact with one another. The effect is cumulative. It builds over time, shaping not just opportunities, but health itself.
What made the presentation particularly powerful was how it connected these structural ideas to real human consequences. Racism was described as something that works on multiple levels at once: from overt abuse or violence, to the less visible but equally damaging experience of simply knowing that you live in a society where you may be treated unfairly. That awareness alone carrying the expectation of discrimination creates a constant undercurrent of stress and anxiety.
She explained how this stress doesn’t just sit in the mind. It translates into physical outcomes. People exposed to racism are more likely to experience anxiety, depression, and long-term distress, but also physical health inequalities such as cardiovascular disease. These outcomes are often misunderstood or misrepresented. Too frequently, they are explained away as lifestyle issues diet, exercise, personal choice without recognising the deeper social conditions that shape those behaviours in the first place.
A particularly striking part of the presentation focused on how people respond to these pressures. When individuals feel powerless to change their circumstances, they may turn to coping mechanisms smoking, drinking, or withdrawing from services. These responses are then judged in isolation, rather than understood as part of a wider context. In this way, the system not only fails to address the root causes but can end up reinforcing blame on the individual.
Perhaps the most important insight came when the discussion turned to healthcare itself. Even when services are available, they are not always experienced as safe or trustworthy. Saffron shared research showing that people may avoid seeking help not necessarily because of direct negative experiences, but because of what they have seen and heard about racism more broadly. The perception of risk becomes enough to keep people away.
One example described a woman who, during the COVID period, chose to avoid hospital care entirely. Her decision was shaped by what she had seen in public discourse and online reactions to racial justice movements. It left her feeling that she could not trust how she would be treated. This kind of anticipatory fear of not being treated with dignity or fairness adds another layer of stress to an already difficult situation.
The presentation also challenged the way healthcare systems understand illness. Many services still operate within a narrow biomedical framework, focusing on symptoms and diagnoses while overlooking the social realities that contribute to them. For people from marginalised communities, this can lead to experiences where their perspectives are dismissed or misunderstood. They may try to explain how racism, housing, poverty, or life circumstances have shaped their health, only to find those explanations sidelined.
This is where the concept of “epistemic injustice” becomes important, although Saffron didn’t dwell on jargon, the meaning was clear. It is about whose knowledge counts. When patients and carers are not listened to, or when their experiences are not taken seriously, care becomes something done to them, rather than with them. For many, this is not just frustrating it is re-traumatising.
Professor Saffron also showed a video – Nilaari delivering hope A community mental health provider for people of colour, which you can watch below.
1. “You’ve explained the problems, but what are the solutions?”
Answer: Saffron acknowledged that addressing racism at its root is complex and long-term, but highlighted practical steps:
Services must be co-produced with people who have lived experience
Communities need to be actively involved in decision-making spaces
Grassroots and voluntary organisations should be:
properly funded
meaningfully included in policy and service design
She emphasised that change should be done with communities, not to them, and that learning from effective third-sector approaches is key.
2. “Do you look at drug and alcohol use as part of racism-related issues?”
Answer: Yes, but not in the way systems often frame it.
Saffron explained that:
Substance use is often a response to difficult life experiences, including racism and poverty
Systems tend to treat it as an individual problem, rather than understanding the wider causes
These behaviours can reflect a lack of:
support
options
alternative coping mechanisms
She stressed the importance of shifting away from blame and towards understanding context.
3. “Is trauma-informed care part of the solution?”
Answer: Trauma-informed care is important, but not sufficient on its own.
Saffron highlighted that:
Current models of trauma-informed care can be too narrow
They often fail to fully account for:
systemic racism
structural inequalities
Services also need to recognise that they themselves can contribute to trauma
She suggested that trauma-informed approaches must be:
culturally sensitive
shaped by different communities’ understandings of trauma
4. “What do you mean by ‘racism is a virus’?”
Answer: Saffron used this idea as a metaphor.
She explained that:
Racism spreads and reproduces across society, much like a virus
It moves through:
institutions
policies
social interactions
It grows and reinforces itself over time
At the same time, she used this idea to challenge overly individualised thinking—highlighting that racism is structural, not just personal.
King’s College London: When Crisis Care Comes Too Late presented by Phoebe Averill.
After the earlier discussion on racism and inequality, the presentation from King’s College London brought the conversation into something more immediate what actually happens when someone reaches crisis point and needs urgent mental health support.
Phoebe Averill and her team focused on pathways under the Mental Health Act, but what emerged wasn’t a technical discussion. It was a picture of a system that often struggles at the exact moment it is supposed to respond.
They began by looking at the period just before crisis. In many cases, there are early warning signs. Carers and families notice changes subtle at first, then more obvious. They often try to raise concerns early, hoping intervention might prevent things from escalating. But too often, those early signals are not acted on.
By the time the system responds, the situation has already deteriorated.
The research highlighted that delays are not caused by a single issue, but by a combination of pressures within the system. These include:
shortages in hospital beds
fragmented coordination between services
breakdowns in communication across teams
While these explanations are familiar, the impact of them feels anything but routine. During the waiting period, people do not remain stable. They become more unwell, more distressed, and more at risk. What could have been addressed earlier becomes a crisis that is harder to manage.
One of the most striking parts of the presentation was the focus on what happens in that gap between “something is wrong” and “help arrives.” That space is where much of the pressure shifts onto carers.
Carers described being left to manage situations that are escalating in real time. They are expected to keep someone safe, to monitor behaviour, and to absorb the emotional weight of what is happening all while waiting for services to respond. In some cases, this can last days or even weeks.
This isn’t a formal role, and it’s not one carers are prepared for. It’s something they step into because there is no alternative.
The consequences of these delays don’t end when care finally arrives. By that point, the impact can already be significant. The research pointed to outcomes such as:
worsening mental health leading to longer hospital stays
increased risk of avoidable harm during the waiting period
disruption to housing, employment, and relationships
In other words, the delay itself becomes part of the problem, shaping what happens next.
Another important thread running through the presentation was the role of carers’ knowledge. Carers are often the first to recognise when something is changing. They understand patterns, triggers, and early warning signs in a way that professionals may not see immediately. Yet this insight is not always taken seriously or acted upon.
The result is a system that tends to respond late rather than early intervening at crisis point, rather than preventing it.
The KCL team were clear that their research is trying to address this gap. They spoke about building a lived experience advisory group and involving carers and service users directly in shaping the work. There was a clear intention to move beyond observation and towards something more collaborative, where lived experience informs how the research develops.
At the same time, there was a quiet recognition in the room that much of this is not new. Similar issues have been raised repeatedly over the years. The difference here was not the discovery of the problem, but the clarity of where it sits in that critical moment where response is needed, and the system is slow to act.
Placed alongside the earlier discussion on racism, this presentation added another layer of understanding. It showed how broader inequalities are not abstract—they play out in very real ways at the point of crisis. Where trust is already fragile, delays make it harder to engage. Where carers are already stretched, the system’s response can increase that pressure rather than relieve it.
By the end of the session, one idea stood out clearly: this is not just about whether care is available. It is about whether it comes at the right time, whether the right people are listened to, and whether the system is able to act before situations reach breaking point.
Parliamentary and Health Service Ombudsman: When Accountability Feels Out of Reach
The next presentation of the forum came from the Parliamentary and Health Service Ombudsman team, who joined to explain how carers and families can raise concerns when NHS care goes wrong.
On the surface, this was a session about process how complaints move through the system and when the Ombudsman becomes involved. But as the discussion unfolded, it became clear that this was really about something deeper: whether accountability is genuinely accessible to carers in practice.
The team described their role as an independent body that steps in once local complaints processes have been completed. In theory, the pathway is clear. Before approaching the Ombudsman, people are expected to go through several stages:
raise concerns with the service directly
receive a formal response, often referred to as the “final response letter”
only then escalate the complaint for independent review
What sounds straightforward on paper quickly became more complex when viewed through lived experience.
Carers shared how difficult it can be to even reach that final stage. The process can take months, sometimes longer, and often requires sustained effort just to keep it moving. Following up, chasing responses, and navigating unclear communication becomes part of the experience.
One comment in the chat captured this reality clearly:
“It can be hard to get to the point of getting a final outcome letter… the amount of advocacy and chasing that needs to happen…”
Another highlighted how far removed the process can feel from everyday awareness:
“It takes far more than 12 months to even come into awareness…”
In response, the Ombudsman team acknowledged that delays particularly at the final response stage are common. They explained that in some cases, where delays are extreme, they may contact organisations directly, and they encouraged people to use their helpline for guidance when processes stall.
But even with that support, there was a sense in the room that the system places a significant burden on those trying to access it. By the time someone considers making a complaint, they are often already dealing with the aftermath of a difficult experience. Adding a lengthy and sometimes frustrating process on top of that can feel overwhelming.
The conversation also turned to accessibility. Questions were raised about language, digital access, and the assumptions built into how information is shared. Not everyone engages with systems in the same way, and not everyone finds it easy to navigate written guidance or formal processes.
Participants pointed out that some communities may never reach the complaints stage at all—not because issues don’t exist, but because the pathway itself is difficult to access.
This was reflected in a simple but powerful comment:
“We are assuming that everyone reads…”
There were also wider reflections about how systems could better meet people where they are, including:
making information available in more accessible formats and languages
reaching people through community networks, not just formal channels
Even within this practical discussion, the themes from earlier in the forum remained present. Trust, accessibility, and lived experience all shaped how people understood the complaints process.
Placed alongside the earlier presentations, this session added an important dimension. If the system fails as described in the discussions on racism and crisis care—then the ability to challenge that failure becomes critical. But if the route to accountability is difficult to navigate, many experiences may never be formally recognised.
What emerged was not a rejection of the Ombudsman’s role, but a recognition of the gap between what exists and what is accessible.
Because accountability is not just about having a process in place. It is about whether people can realistically use it especially at a time when they may already be stretched, exhausted, and navigating multiple pressures.
Universal Care Plan and Carer Contingency Planning Update
The final contribution to the forum came from Thomas Ince, introducing the Universal Care Plan often referred to as UCP. After the earlier discussions on racism, crisis care, and accountability, this felt like a shift towards something more practical: what the system is trying to build in response to the gaps carers have been describing.
At its core, the Universal Care Plan is a digital tool designed to allow people to record and share information about their care. It sits within the NHS App and is intended to bring together health, social care, and voluntary services around a shared understanding of a person’s needs and preferences.
Thomas described how the system has evolved over time. It began with a focus on end-of-life care, making sure that a person’s wishes could be accessed quickly by professionals such as ambulance crews. It then expanded into areas like sickle cell crisis planning and is now being extended further to cover a wider range of conditions and situations.
The direction of travel is clear: moving from a professionally controlled system towards something more person-owned, where individuals can enter their own information and shape how their care is understood.
A Tool That Centres “What Matters to You”
One of the key features Thomas highlighted was a section within the plan that allows people to describe themselves in their own words. Rather than being defined only by diagnosis or clinical notes, individuals can record what matters to them information that can then be seen by anyone involved in their care.
In principle, this is a shift towards more personalised and human-centred care. It offers a way to capture context, preferences, and lived experience in a system that often reduces people to categories.
But for this forum, the most significant element was something more specific.
The Carer Contingency Plan
Thomas introduced a feature that immediately resonated with the group: the carer contingency plan.
This allows carers to record what should happen if they are suddenly unable to provide care. For example:
if they become unwell or need urgent medical attention
if there is a sudden change in their circumstances
In those situations, the system can alert professionals to the fact that someone is dependent on that carer and provide information about what support is needed.
For many carers, this addressed a very real and often unspoken concern: what happens to the person they care for if something happens to them?
The idea that this information could be visible across services—rather than held informally or not at all felt like a meaningful step.
From Concept to Reality: The Challenge of Engagement
While the tool itself was broadly welcomed, the discussion quickly moved beyond what it does to how it will actually be used.
Thomas was open about the current stage of development. Although the system is available, it remains largely driven by professionals, with limited public awareness. One of the key aims now is to shift towards wider engagement encouraging people to take ownership of their care plans and input their own information.
This raised an important question in the room: how do you introduce a digital solution into communities where trust in services is already fragile?
Participants pointed out that many people particularly from ethnic minority backgrounds—do not engage easily with primary care systems. If the entry point to the Universal Care Plan is through those same systems, there is a risk that the people who could benefit most may not use it at all.
Suggestions began to emerge organically from the group, reflecting a more community-led approach:
working through carer centres, peer groups, and local networks
engaging cultural organisations and community leaders
using spaces where trust already exists, rather than relying solely on formal channels
There was a clear sense that communication could not be an afterthought. It needed to be built into the design of how the tool is introduced.
Language and Accessibility: A Tension Exposed
One of the most striking moments in this section came when language accessibility was discussed.
At present, the NHS App and therefore the Universal Care Plan is only available in English (and Welsh). Thomas acknowledged that this is a limitation and that while there are conversations about future solutions, no immediate changes are in place.
This prompted a strong reaction from participants. There was frustration that a tool described as “universal” could exclude large sections of the population from the outset. For some, this was not just a technical issue but a reflection of a wider pattern—systems being designed without fully considering the diversity of the communities they serve.
It brought the discussion back to a familiar theme from earlier in the forum: inclusion cannot be added later, it has to be built in from the beginning.
A Step Forward With Conditions
Despite these concerns, there was recognition that the Universal Care Plan has real potential.
The idea of having:
shared, accessible information across services
visibility of carers and their responsibilities
a contingency plan that reduces risk in emergencies
addresses issues that carers have been raising for years.
But the conversation made it clear that the success of the tool will depend on more than its functionality. It will depend on whether people:
know about it
trust it
can access it
and feel that it reflects their needs and realities
Without that, there is a risk that it becomes another well-intentioned solution that doesn’t reach the people it was designed for.
Placing It in the Wider Conversation
Coming at the end of the forum, this presentation connected in an important way to everything that had been discussed earlier.
Where Saffron’s presentation explored the structural roots of inequality, and the KCL research showed how system delays affect people in crisis, the Universal Care Plan represented an attempt however early to respond to those issues in practice.
But it also revealed the ongoing challenge.
Because even when new tools are introduced, they are still shaped by the same system dynamics: questions of trust, access, communication, and inclusion do not disappear they simply take new forms.
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.
By Matthew McKenzie – Triangle of Care Community Chair.
The meeting opened with a welcome to carers, professionals, and partner organisations, reinforcing the importance of the Community Group as a collaborative and inclusive space. The Chair highlighted the ongoing commitment to co-production, ensuring that lived experience remains central to all Triangle of Care development and decision-making.
The purpose of the meeting was outlined, with emphasis on shared learning, constructive challenge, and influencing national work. Members were reminded that discussions within the group directly inform improvements to Triangle of Care standards, guidance, and implementation across services.
2. Triangle of Care Update (with Q&A)
Mary Patel – Carers Trust
The Triangle of Care update focused on how the programme continues to evolve as a learning-led, improvement-focused framework rather than a compliance or inspection tool. Members were reminded that the Triangle of Care is designed to support services to reflect honestly on how well carers are recognised, involved, and supported, and to identify practical actions for improvement.
The update highlighted the growing maturity of the self-assessment and peer review process. Increasingly, organisations are using the framework not only to evidence good practice but to challenge themselves, learn from others, and embed carer partnership more consistently across teams and pathways.
Self-Assessment and Peer Review: What’s Working Well
The self-assessment process continues to be a key entry point for organisations engaging with the Triangle of Care. Where we were updated on how self-assessment encourages teams to pause and reflect on everyday practice, policies, and culture, rather than relying solely on written procedures. When combined with peer review, this reflection is strengthened by external challenge and lived-experience insight.
As part of the update, members were updated on emerging learning from Triangle of Care reports, including self-assessment submissions and peer review feedback. These reports were described as an important source of insight into how carer involvement is experienced on the ground, highlighting both areas of strong practice and recurring challenges across services
NOTE: These include reports going back 6 months, so not all NHS trusts listed
Peer review was described as most effective when organisations approach it with openness and curiosity. Lived-experience peer reviewers play a crucial role in asking different questions, highlighting blind spots, and grounding discussions in real-world carer experience.
A key discussion point was how to balance national consistency with local flexibility. Members acknowledged that while the Triangle of Care provides a shared framework and standards, services operate within different contexts, populations, and resource constraints.
Triangle of care and Patient Carer Race Equality Framework updates
The Triangle of Care and PCREF Phase 2 pilot will be launched in April 2026, to test co-produced specialist guidance to support integration of carers from racially marginalised communities into the Triangle of Care.
Alignment with Wider System Priorities
Members discussed how Triangle of Care activity aligns with broader system developments, including Mental Health Act reform, integrated care, and equality frameworks. There was strong agreement that Triangle of Care should not sit in isolation but be embedded within wider quality improvement, safeguarding, and workforce development agendas.
The need to visibly align Triangle of Care with the Patient and Carer Race Equality Framework was reiterated. Members emphasised that carers must be able to see how equality commitments translate into tangible actions within standards, training, and evidence.
Key points
Aligning Triangle of Care with Mental Health Act reform
Embedding within wider system and quality frameworks
Stronger visibility of equality and race equity
Carer Voice and Evidence of Impact
A recurring theme was the importance of demonstrating impact. Members discussed how services can better evidence carer involvement and experience beyond policies and training records. This includes qualitative feedback, lived-experience insight, and examples of how carer input has influenced service design and delivery.
Emerging Challenges and Areas for Development
The update also acknowledged ongoing challenges, including workforce pressures, digital transformation, and uneven awareness of the Triangle of Care across organisations. Members noted that carer involvement can become fragile during periods of change unless it is firmly embedded in systems and culture.
Summary: Where the Programme Is Heading
The Triangle of Care update concluded with a shared understanding that the programme is well-established but still evolving. The focus for the next phase is on deepening impact, strengthening alignment with equality and legislative change, and supporting services to move from intention to consistent, inclusive practice.
Key discussion points
Peer review as a developmental, learning-focused process
Balancing national consistency with local flexibility
Alignment with Mental Health Act reform and equality frameworks
Keeping carer voices central to assessment and review
3. Sharing Experiences as a Peer Reviewer
Carer involved with Avon & whitlshire
A carer presented from her involvement at Avon and Wiltshire Mental Health Partnership NHS Trust, where she is involved as a lived-experience peer reviewer contributing to Triangle of Care.
She shared reflections from her role as a lived-experience peer reviewer. She spoke about the importance of authenticity, trust, and transparency in the peer review process, and how lived experience strengthens both credibility and impact. Her contribution reinforced the value of co-production and highlighted how peer review can challenge assumptions, surface good practice, and promote more carer-inclusive cultures within organisations.
The discussion reinforced that organisational openness and leadership engagement are critical to turning peer review feedback into real change. Members reflected on how hearing directly from peer reviewers deepens understanding of the practical impact of policies on carers.
Q&A / Discussion
Members asked how organisations typically respond to lived-experience feedback.
The involved carer noted that openness and leadership support were key factors in whether reviews led to meaningful change.
Discussion reinforced the importance of preparing services for peer review so that carers feel genuinely welcomed and listened to.
4. Carer Contingency Planning – Presentation and Local Practice
Mary Patel Local example: Carly Driscoll – Bradford District Care
This session focused on carer contingency planning as a key element of carer support and crisis prevention. The presentation outlined why contingency planning is critical in reducing carer anxiety, preventing emergency admissions, and ensuring continuity of care when carers are unable to continue their role.
Carer Contingency Planning (CCP), as championed by Carers Trust, is designed to support carers by planning ahead for times when they might suddenly be unable to continue caring. This might include illness, emergencies, hospitalisation, or other crises. CCP shifts the focus from reactive support during crisis moments to proactive planning that reduces anxiety and prevents avoidable breakdowns in care.
Carers Trust emphasises that CCP is a conversational, personalised process where the carer’s expertise is central. Carers know the routines, preferences, and cues that matter for the person they care for; the goal of CCP is to capture that knowledge in a way that can be shared quickly and effectively with services, families, and emergency responders when needed.
A local practice example from Bradford District Care demonstrated how contingency planning can work in practice, highlighting practical tools, partnership working, and engagement with carers. Discussion explored the benefits of clear, accessible plans, while also acknowledging challenges around awareness, consistency, and uptake
The local practice example demonstrated how contingency planning can be embedded into routine work through partnership approaches and proactive engagement with carers. Members discussed the importance of introducing plans early and reviewing them regularly.
Key features of the Bradford approach
Routine integration: CCP discussions happen early, not just in crisis moments
Partnership working: Health, social care, and voluntary sector staff work in concert
Accessible documentation: Plans are shared in forms that carers can use and update
Support for carers: Carers are supported to lead the planning, not be passive recipients
Ongoing review: Plans are revisited as needs and circumstances evolve
Benefits seen locally
Carers report feeling more confident and less anxious
Greater clarity across professionals when carers are unavailable
Fewer last-minute, unplanned crises or service escalations
Better use of local support networks when official services are stretched
Q&A / Discussion
Questions focused on how contingency plans are introduced to carers and reviewed over time.
Members raised concerns about low awareness of contingency planning among carers not already engaged with services.
Discussion highlighted the need for flexibility, recognising that carers’ circumstances can change rapidly.
5. Carer Contingency Planning – System Perspective
Sara Lewis – SW London ICB
Sara Lewis’s session focused on Carer Contingency Planning (CCP) as a core, preventative element of carer support rather than a reactive or optional add-on. CCP is a structured way of planning for what should happen if a carer is suddenly unable to continue caring due to illness, crisis, exhaustion, or an emergency. At its heart, CCP is about reducing uncertainty and anxiety for carers while ensuring continuity and safety for the person they support.
Sara emphasised that effective CCP recognises carers as partners with expert knowledge of the person they care for. The process supports carers to articulate what matters most, what routines and support are essential, and who needs to be contacted in an emergency. When done well, CCP helps prevent avoidable crises, emergency admissions, and breakdowns in care by making plans visible, accessible, and shared across relevant services.
Accessibility was a major theme, particularly the risks of digital exclusion. While digital tools can be effective, members stressed the need for non-digital options, language support, and culturally appropriate approaches to ensure equity.
Key Takeaways from Sara Lewis’s Session
Carer Contingency Planning is preventative, not reactive
CCP is built on early, ongoing conversations with carers
Plans should reflect what matters to carers and the cared-for person
CCP must be accessible, inclusive, and culturally appropriate
Digital tools can help, but must not increase exclusion
Successful CCP requires shared ownership across services
When embedded well, CCP reduces crisis, anxiety, and system pressure
Q&A / Discussion
Members questioned how to balance digital innovation with the risk of digital exclusion.
Language barriers and accessibility for carers with different communication needs were highlighted.
Discussion emphasised that contingency planning must be embedded into standard care planning processes, not treated as optional or additional.
6. Looking Ahead: Priorities for the Community Group
The “Looking Ahead” discussion focused on how the Triangle of Care Community Group can continue to influence meaningful change for carers in an evolving policy and practice landscape. Members reflected on the increasing complexity of health and care systems and the importance of ensuring that carers are not left behind as reforms, digital transformation, and workforce pressures accelerate.
A strong theme throughout the discussion was visibility, making carer involvement, equality, and partnership explicit in practice, evidence, and outcomes. Participants emphasised that carers must not only be recognised in principle but experience consistent involvement and support in real-world settings. The group agreed that the next phase of work should strengthen both strategic influence and practical implementation.
Mental Health Act Reform and Carer Involvement
Members discussed the implications of upcoming Mental Health Act reform, particularly around carers’ rights, information-sharing, and involvement in decision-making. There was recognition that Triangle of Care principles provide a strong foundation for supporting services to meet new expectations, but that further work will be needed to translate legislation into everyday practice.
The group highlighted the risk that carers could be inconsistently involved if workforce understanding is weak or if systems focus narrowly on legal compliance. Proactive guidance, training, and examples of good practice were seen as essential to ensure carers are meaningfully included rather than consulted as an afterthought.
Equality, Race Equity, and Inclusion
A central priority looking ahead is ensuring that Triangle of Care activity visibly aligns with the Patient and Carer Race Equality Framework (PCREF). Members stressed that carers from racialised and marginalised communities often face additional barriers to involvement, including mistrust, cultural misunderstandings, and unequal access to support.
The group agreed that equality must be embedded into standards, peer review evidence, and training—not treated as a parallel or optional agenda. This includes capturing meaningful data, listening to diverse carer voices, and ensuring culturally responsive practice is clearly demonstrated.
Workforce Training and Education
Workforce development was identified as a critical lever for long-term change. Members highlighted the need to strengthen carer awareness training across all roles, particularly for staff new to mental health and social care settings. Without this foundation, carer involvement remains inconsistent and dependent on individual attitudes rather than organisational culture.
There was strong support for influencing pre-registration education, including universities and training providers, to embed carer awareness earlier. This was seen as an opportunity to normalise partnership with carers from the start of professional careers rather than trying to retrofit it later.
Key points
Strengthening carer awareness across the workforce
Embedding Triangle of Care principles early in training
Influencing universities and pre-registration pathways
Moving from individual goodwill to system-wide culture change
Digital, Data, and Accessibility
Digital transformation featured prominently in the discussion, with members acknowledging both its potential and its risks. While improved data systems and digital tools can support information-sharing and coordination, there was concern that carers without digital access or confidence may be excluded.
Participants emphasised that digital solutions must be designed inclusively, with non-digital alternatives always available. Data collection should support understanding of carer experience and inequality, not become a barrier to support.
Key points
Digital tools should support, not replace, relationships
Risk of digital exclusion for some carers
Importance of non-digital alternatives
Using data to improve equity, not reinforce gaps
Young Carers and Marginalised Groups
Supporting young carers and carers from marginalised communities was highlighted as a continuing priority. Members noted that these groups are often under-identified and less likely to be involved in care planning or decision-making, despite carrying significant caring responsibilities.
The group agreed that future work should focus on visibility, early identification, and tailored approaches that recognise the specific needs and challenges faced by these carers. Partnership with education, community, and voluntary sector organisations was seen as essential.
Key points
Improving identification of young carers
Addressing barriers faced by marginalised carers
Tailored, age-appropriate and culturally sensitive support
Stronger partnership working beyond health services
Collective Commitment Moving Forward
The discussion concluded with a shared commitment to using the Community Group as a platform for influence, learning, and accountability. Members recognised the value of continuing to share practical examples alongside strategic discussion, ensuring that Triangle of Care principles are translated into everyday practice.
Looking ahead, the group aims to remain proactive, inclusive, and responsive—supporting services to recognise carers as equal partners and ensuring that no carer is left unseen or unsupported as systems evolve.
Key discussion points
Preparing for Mental Health Act reform
Embedding the Patient and Carer Race Equality Framework
Improving workforce training and education pathways
Supporting young carers and marginalised communities
Improving data and digital systems without exclusion
As Chair I thanked contributors and reaffirmed the importance of continued collaboration to ensure carers are recognised as equal partners in care, with Triangle of Care principles translated into meaningful practice across services.
For those interested to hear more about triangle of care, see details below
Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum
On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.
This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.
Highlights from July’s Forum
🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.
🟣 Powerful Feedback from Carers Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”
Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.
These testimonies highlighted how far we still need to go.
🟡 Inclusive Language & Representation There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.
🟢 The Work Ahead Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.
A Forum of Global Carers, Local Action
This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.
One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.
Want to Get Involved?
The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.
For bookings or questions, contact me at info@caringmindblog.com 📱 Or download and scan the QR code in the flyer above
Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.
Next National MH carer forum in August 29th 10:30 am Matthew McKenzie Founder – Caring Mind Blog Facilitator – National Ethnic Mental Health Carer Forum
On 21st of July 2025, carers, professionals, and stakeholders from across the UK gathered virtually for the latest Triangle of Care (ToC) Community Meeting. Chaired by Matthew McKenzie, this session was packed with insight, action points, and open dialogue. Whether you were new to the group or a long-time contributor, there was something valuable for everyone.
This meeting was particularly significant as it marked a turning point for carer participation. The formal recognition of the community group in ToC’s national governance structure. It affirmed that carer lived experience should not be sidelined, and that carers must continue to shape mental health services from the inside out.
If you weren’t able to attend, this blog will bring you up to speed. As the ToC community group covered a wide range of topics, from updates on national strategy and governance, to inclusive language, carer-led training, and advocacy for better research funding. At the heart of it all was a single message: when carers unite, systems must listen.
Official Recognition and Governance Progress
We are delighted to announce that the Triangle of Care Community Group is now formally integrated into the Triangle of Care governance structure. This gives the group a direct route to influence national decisions. The community will now sit alongside steering and regional groups in shaping policy, reviewing practices, and helping determine what carer inclusion should look like across all participating trusts.
What this means practically is improved alignment and visibility. For years, many carers and grassroots contributors have worked tirelessly behind the scenes, often without formal platforms. This change allows community voices to be heard before decisions are made not just consulted afterwards. Matthew described this shift as “a recognition of the years of unpaid care, leadership, and advocacy carers have always provided.”
It also means that our meetings will align with national timelines and decisions, ensuring a timely flow of updates between local groups, regional networks, and national forums. This is a pivotal opportunity to embed carers more meaningfully into NHS structures and accountability.
New Mailing List & Sign-Up System
Mary Patel from Carers Trust announced the launch of a new centralised mailing list for Triangle of Care community members. This will make sure everyone receives meeting invites, resources, and updates reliably. Participants will soon be asked to complete a Microsoft sign-up form, which will securely transfer contact details onto the Carers Trust system for ongoing communications.
The form will include a few demographic questions to help build a picture of the diversity within the ToC community. These questions are entirely optional but are designed to help Carers Trust identify who is engaging, and where gaps might exist—ensuring outreach strategies reflect real needs. For example, better regional balance, or increased visibility for underrepresented carer groups.
There was also discussion about moving from Zoom to Microsoft Teams for future meetings. Teams offers benefits like attendance tracking, secure file sharing, and easier scheduling. However, this won’t be a forced change, Matthew and Mary invited feedback, emphasising that any transition would be made collaboratively with community input.
Stronger Carer Involvement
Carer involvement was at the heart of the meeting. Matthew shared a passionate update on the need for carers particularly those from minority backgrounds or marginalised communities to step forward and engage in all aspects of the Triangle of Care. This includes involvement in peer reviews, shaping surveys, and suggesting new training or webinar content that reflects their lived experience.
The community was reminded that leading change doesn’t require a title or formal position. Sharing your story, participating in surveys, or simply raising your hand during a meeting is a form of leadership. Matthew emphasised that carers hold the kind of insight that no policy or textbook can replicate. As he put it, “This community is only as strong as the carers who show up.”
Peer reviewing was especially encouraged. Carers can play a vital role in reviewing mental health trust practices and making sure those trusts aren’t just ticking boxes but are genuinely improving the carer experience. Anyone interested in joining these review panels was invited to contact Mary Patel directly. The experience is meaningful and empowering and it places carers right where they should be: in positions of influence.
CQC Expectations and Carer Experiences
A powerful part of the meeting focused on the role of the Care Quality Commission (CQC) and how effectively it monitors carer inclusion in mental health services. Several carers and professionals shared their experiences some positive, others deeply concerning about how the CQC engages (or fails to engage) with carers during inspections.
A senior experience lead from an acute trust, explained that when CQC inspectors review services, they typically look for a clear carers policy, systems for identifying and supporting carers, and evidence of staff training. However, the level of scrutiny and the quality of carer-related feedback can vary significantly between inspections. The experience lead noted that while policy is important, it’s the systems around those policies that really matter, things like whether staff actually follow them, and whether carers know where to go for help.
Carers in the meeting shared contrasting experiences. A carer described a disappointing CQC visit where the inspector seemed dismissive, rushed, and uninformed about carers’ rights. Her feedback about lack of communication and exclusion was barely acknowledged, leaving her feeling invalidated. In contrast, Another carer spoke of a more recent inspection where the CQC officer seemed empathetic, asked thoughtful questions, and even disclosed their own possible caring experience. These differing accounts highlighted a common theme: carers’ confidence in the CQC is mixed, and their approach to carers can sometimes feel inconsistent.
There was strong consensus that CQC needs better training in carer engagement and not just understanding legal frameworks like the Care Act 2014, but also how to meaningfully include carers in service reviews. Kelvin added that cultural competence should also be part of the equation, noting that carers from minority backgrounds are too often left out of consultations. Matthew urged carers not to wait for trusts to invite them to speak during inspections ask to be involved, request to meet inspectors, and use carers’ councils or governors to raise visibility. It was clear from this session that carers want the CQC to be more than a compliance body, they want it to be a true advocate for accountability and equity in care.
Confidentiality Roadshow by Donna Bradford
A standout session was led by Donna Bradford, who presented her team’s work on the Confidentiality Roadshow a training programme developed by Lincolnshire Partnership NHS Foundation Trust. Designed to upskill staff on consent, confidentiality, and communication, the roadshow is tailored around carer inclusion and co-produced with the Carers Council.
The training helps staff understand not only what they can share legally, but also how to navigate nuanced emotional and ethical situations with carers. Donna reminded attendees that sharing basic, non-confidential information, such as medication side effects, is not only lawful but essential. “If you can Google it, you can say it,” she noted, driving home the importance of clarity over confusion.
Over 550 staff have already received the training, with 100% reporting that it improved their confidence. The programme includes real-life carer scenarios, emotional video testimonials, and interactive quizzes to help reinforce learning.
Beyond the training content itself, what makes the Confidentiality Roadshow so impactful is its co-production with carers. Donna highlighted that every scenario used in the sessions came from real-life examples shared by carers and families. This ensures the training isn’t theoretical so it’s grounded in lived experience. The emotional and practical realities of caring for someone with mental health needs are at the heart of the learning, helping staff understand why clear, compassionate communication is so essential. The training also underscores the importance of listening to carers, not just as bystanders but as active contributors to a person’s care journey.
Several attendees raised the idea of incorporating this training into broader staff induction and continuing professional development programmes. Others asked about adapting it for use in different trust settings, such as acute hospitals or community services. Donna encouraged trusts to reach out if they’d like to adopt or customise the resource. The message was clear: confidentiality shouldn’t be a barrier, it should be a bridge, and with the right training and tools, staff can navigate those conversations with confidence, legality, and humanity.
Mental Health Research Petition
Irene Harris spoke passionately about a new parliamentary petition calling for improved research funding into serious mental illnesses (SMIs) like psychosis. The petition aims to shine a spotlight on how outdated treatments and under-researched conditions continue to place carers and their loved ones in difficult, often heartbreaking positions.
Here is the video about Psychosis medication and its impact by the Stockport carers forum.
She shared how mental health medications for SMIs haven’t evolved as rapidly as physical health treatments, and how this results in long-term side effects and compromised quality of life. Research is desperately needed, not only to improve diagnosis and treatment, but also to create support structures that ease the burden on unpaid carers.
Irene asked attendees to sign and circulate the petition widely, with a goal of hitting 10,000 signatures by November 15th.
She also announced plans to launch new social media channels to raise awareness. This initiative is about more than funding it’s about giving carers and service users a louder voice in national healthcare priorities.
or contact Irene on irene@mhcarersgroupstockport.co.uk
Language, Inclusivity, PCREF & the ‘Global Majority’ Debate
Language and inclusivity were major themes of the meeting, particularly around the term “global majority.” Some attendees expressed concern that the phrase could be divisive or misinterpreted, particularly by politically sensitive audiences or media outlets. A carer shared a personal anecdote illustrating how words can carry unintended consequences.
Others responded by highlighting the intention behind the term to emphasise that those historically described as “minorities” are, in fact, the global majority in population terms. They called for continued use of the phrase in contexts that promote empowerment, equity, and lived experience.
The discussion didn’t produce a consensus, but it modelled what respectful disagreement and co-learning should look like. Matthew reinforced that ToC should be a space for constructive dialogue, not debate for its own sake. Ultimately, we are united in our aim to ensure no carer is left behind regardless of background, heritage, or identity.
Next Steps & Community Actions
The session wrapped up with a summary of action points and responsibilities. Carers Trust will soon circulate the new mailing list sign-up form. Matthew will share updated meeting dates for 2026 once confirmed, and he will continue to distribute posters for the upcoming National Ethnic Carers Group, taking place on the last Friday of each month.
There will be support the rollout of the Confidentiality Roadshow materials and follow up with those interested in joining peer review panels. A reminder was issued for everyone to contribute to current surveys, share their feedback, and suggest future topics for community meetings.
Finally, participants were encouraged to stay connected beyond the meetings. Whether through peer networks, local carers centres, or email updates, the message was clear: carers must stay visible, vocal, and valued. You are the change-makers, and this group is your platform.
Final Thoughts: “Carers Are Not Just a Cog in the Wheel”
Matthew ended the session with a rallying call to action: “We’re not just a cog in the wheel as we are the energy behind it.” His words served as a reminder that carers are not passive recipients of services. They are drivers of quality, advocates for change, and protectors of dignity in the mental health system.
He also reminded everyone that systems often change slowly, but they do change when people keep showing up, keep speaking up, and keep sharing their truths. “This isn’t just about the Triangle of Care,” he said. “It’s about reshaping the whole narrative around mental health and care.”
If you missed the meeting and would like to receive the slides, recordings, or further resources, feel free to contact Matthew McKenzie directly: 📧 mmckenzie@carers.org
Thanks to to all who attended, contributed, and championed carers’ voices. The next meeting should in September where we hope to see you there.
A Caring Mind 