The FOCUS Project, an international research study exploring the experiences of South Asian families who have a family member with intellectual and developmental disabilities.
Researchers are seeking to hear from:
South Asian parents and family carers
Adult brothers and sisters of people with intellectual and developmental disabilities
Professionals who work with South Asian families and children with disabilities
Families interested in sharing their experiences through surveys and discussion groups
The study aims to improve understanding of the challenges, strengths, and support needs of South Asian families, helping to inform future services and policies.
Ways to Get Involved
Work Package 1 – Family Survey Take part in an anonymous online survey exploring family experiences. Each section takes approximately 10–15 minutes, and participants can complete one, two, or all three parts.
Work Package 2 – Professional Survey Professionals working with children and young people with intellectual and developmental disabilities from South Asian backgrounds are invited to share their views on family-oriented partnership practices.
Work Package 3 – Online Discussion Groups South Asian parents and adult siblings are invited to join a small online discussion group lasting around one hour to share their experiences in more depth.
Your Voice Matters
Every family’s experience is unique. By taking part, you can help researchers better understand the realities of caring for a loved one with intellectual and developmental disabilities and contribute to improving support for future generations.
For more information about the FOCUS Project, please visit the study website or contact the research team at focus.project@uea.ac.uk.
To hear more about the project, they will present at my National ethnic mental health carers forum for the 26th of June. Book via my forum page.
Poetry has a unique ability to capture experiences that are often absent from reports, datasets, and meeting minutes. My Anger Without Permission explores the emotional reality of being an ethnic minority unpaid carer navigating mental health services while experiencing exclusion, microaggressions, invisibility, and a lack of recognition.
These themes are closely connected to the aims of the Patient and Carer Race Equality Framework (PCREF), NHS England’s anti-racism framework for mental health services, which seeks to improve access, experience, and outcomes for racialised communities by ensuring that patients and carers are listened to, involved, and able to influence change.
Central to PCREF is the belief that lived experience should shape services, and poetry provides a powerful way for carers to share those experiences in their own words.
My poem also highlights why unpaid carers must be visible within conversations about race equality and mental health. Many carers from ethnic minority communities provide significant emotional and practical support while feeling overlooked by the very systems they help sustain. By sharing stories through poetry, carers can challenge assumptions, increase understanding, and contribute to more culturally responsive services.
To help amplify these voices, submissions are now being invited for Unpaid, Unseen and Yet Unbroken, a forthcoming poetry collection edited by Matthew McKenzie FRSA BEM. The anthology will showcase poems from minority ethnic unpaid carers, creating a lasting record of their experiences, resilience, hopes, and challenges.
If you are an unpaid carer with a story to tell, this is an opportunity to have your voice heard, published, and become part of a growing movement for equity, recognition, and change within mental health services.
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.
I recently attended the “Making Time for Black Mental Health” event hosted by Bella from Think Tenacity Academy CIC at Cottons Caribbean Restaurant in Vauxhall. The event took place on friday 22nd of May 2026
it was a reminder of the importance of safe community spaces that centre Black wellbeing. The event brought together over 100 attendees, including families, carers, advocates, therapists, Plus Healthwatch Southwark, Healthwatch Lambeth, CNWL Talking Therapies Service Westminster, Carers UK, alongside other community organisations supporting mental health awareness and wellbeing.
We were all united around conversations on mental health, lived experience, and reducing stigma within the Black community.
The event was officially opened by Folake Segun, CEO of Healthwatch Lambeth which led on to meaningful conversations, which I have created a video to show highlights of the event.
As a carer advocate, I found the event especially valuable because it highlighted how community-led support can create genuine impact.
The evening included a Q&A session with Black therapists and speakers who openly discussed mental health challenges, cultural understanding, and the importance of representation in support services.
There were also wellness stalls, books, information tables, and opportunities for local organisations to connect directly with the community. Seeing families, children, and professionals all engaging together showed how mental health conversations can become more accessible and less stigmatised when events are designed with inclusion at the centre.
What stood out most to me was the sense of togetherness and intentional care throughout the event. Think Tenacity’s mission to tackle health inequalities and create spaces where Black people feel seen, heard, and supported was evident in every part of the evening. Hosting the event at a vibrant riverside venue with free entry, wellbeing activities, and opportunities to socialise created an environment where people could relax while also engaging in serious and necessary discussions around mental health.
Events like this are essential because they remind us that advocacy, wellbeing, and community support all go hand in hand.
On Tuesday 28th April 2026, from 2:00pm to 4:00pm, we came together at Cygnet Churchill in Lambeth for what was described as a carers poetry event, but in truth, it became something much deeper.
It became a space where carers could speak, reflect, and be heard.
I hosted the session not just as a PCREF Carer Lead, but as someone with lived experience. That shaped everything the tone, the structure, and the intention behind every part of the agenda.
I made it clear: this was a safe, inclusive, and optional space. No pressure to perform. No expectation to share. Just an invitation.
We began with a simple check-in: “What’s one word you’re arriving with?”
Opening Readings: Creating a Shared Starting Point
I started with a couple of my own poems, drawn from my work around carers, stigma, and racial inequality in mental health.
As shown above, one piece explored the question of who is listened to and who is overlooked within systems. Another focused on stigma and shame, particularly how cultural expectations and institutional barriers can compound the experience of caring.
These weren’t just readings—they were a way of opening the room. An invitation for others to see themselves reflected.
Featured Performer: Karen Ibrahim
We then heard from Karen Ibrahim, whose poetry captured something deeply familiar to many carers the quiet, often invisible emotional labour of caring.
Her piece reflected the silence between carer and loved one, the fear of saying the wrong thing, and the reality of sitting with someone in distress without always knowing how to help. It spoke to that fragile balance carers hold every day.
Karen also shared a series of haiku-style reflections, drawn from carer experiences—short, powerful snapshots of emotion, nature, and coping. They reminded us that even the smallest expressions can carry deep meaning.
Guided Writing Exercise #1: Bringing PCREF to Life
We then moved into the first guided writing exercise.
I paired participants and asked them to:
Match PCREF-related concepts (like equity, advocacy, inclusion, resilience) to their meanings
Use those words to create a short poem or reflection
It was about translating PCREF from policy into lived language.
The results were powerful. Carers wrote about 4 poems altogether, below were the themes, which will be included in the new PCREF poetry book I am working on.
Feeling unseen and unheard
Wanting their voice recognised
Breaking down barriers in care
Finding strength through community
One group asked: “Is my voice not loud enough to be heard?”
I felt that line stayed with me, because it captures exactly what PCREF is trying to address.
Performer & Open Mic (Round 1)
We then moved into our first round of performances, where carers shared both prepared and newly written work.
I felt Brenda brought something unique, blending cultural storytelling and poetry rooted in Jamaican heritage. She reflected on traditional knowledge, community wisdom, and the use of language and folklore as a way of preserving identity and healing. Her use of dialect and storytelling highlighted how culture shapes how we express and understand care.
Next was Annette Davis shared a piece centred on the identity of being a carer, capturing the emotional strain, lack of recognition, and inner strength that comes with the role. Her poem questioned what it means to be labelled a “carer” while navigating burnout, resilience, and the need for self-care.
Next up was Faith Smith and Nadine sharing a powerful reflection on system inequality, exploring the daily pressures of navigating services, the lack of accessible support, and the feeling of being caught in processes that don’t always respond to real-life needs.
Each piece added another layer to the conversation, with different perspectives, but shared truths.
Break & Connection
We paused for a short break and refreshments provided by the kind and wonderful staff at cygnet, but for the poetry event the conversations didn’t stop.
Carers continued to connect. Share stories. and reflected on what they had heard.
This is something I always emphasise, community doesn’t just happen in structured sessions. It happens in those in-between moments.
Creative Exercise session #2: Exploring PCREF Language
After the break, I introduced a second exercise, which was more interactive and reflective.
Participants worked with a word-search style challenge, identifying key PCREF-related terms such as:
Voice
Inclusion
Equity
Community
Trust
Advocacy
Listening
Stereotyping
Rather than writing full poems, we focused on discussion: Which word stands out and why?
The responses were honest and grounded:
“Listening builds trust.”
“Community is where we belong.”
“Inclusion is what drives change.”
“Stereotyping still shapes how we’re treated.”
This is where PCREF becomes real, when people recognise themselves within it.
Performer & Open Mic (Round 2)
We continued with a second round of performances.
Carers shared reflections shaped by:
Cultural identity
Personal caring journeys
The emotional impact of systems
Hope, resilience, and change
Then ended with cultural carer songs by Brenda, see the video of part of the PCREF poetry session below.
In the end PCREF is about improving outcomes for racialised communities—but it cannot succeed if it remains purely clinical.
We:
Translated PCREF into lived experience
Used creativity to engage carers meaningfully
Created a culturally responsive space
Positioned carers as equal voices not passive participants
If you are caring for someone using Cygnet services, contact Family&Friends@cygnethealth.co.uk to join our Voices & Verses poetry group
On Saturday, 25th April 2026, the Lewisham Independent Advisory Group (IAG) hosted its much-anticipated Black Mental Health Conference at Goldsmiths, University of London, in New Cross, London.
The event ran from 1 PM to 4 PM, bringing together community members, mental health practitioners, activists, and service users for an afternoon of learning, discussion, and networking focused on Black mental health.
Setting the Stage
Upon arrival, attendees were welcomed with a vibrant program booklet and a series of informational stalls showcasing local initiatives and mental health support services.
I hosted the “Triangle of Care / Carers UK” stall, which covered support for mental health carers and referial information for carer support.
These stalls featured a wide range of organizations including SLAM, Kawaida Therapy, Families and Communities, and Mindful Mums, providing both resources and opportunities for engagement. The atmosphere was energetic and welcoming, reflecting the conference’s mission of care, connection, and community change.
List of stall holders at the conference
Lewisham Independent Advisory Group (IAG) – SLAM PCREF & N2C pilots, community engagement initiatives.
Coco Collective – Blood pressure checks and health equity support through an Italian community clinic.
NTCG Lee – BeWell Hub – Mental health support: first aid, signposting, ethnic minority therapy referrals, DWP guidance.
London Fire Service – Provides community safety advice.
Alzheimer’s Society – Support for people with Alzheimer’s and carers, including PCREF / OA partner initiatives.
Age UK – Lewisham & MacMillan – Cancer champion services and social prescribing support (PCREF / OA partner).
IMAGO – Lewisham unpaid carers support.
Triangle of Care – Carer peer mental health support.
Occipital Growth CIC – Wellbeing pop-up services.
S.I.R.G. / Walking Men’s Group – School support and men’s mental health & wellbeing programs.
BASCA Reminiscence – Showcases reminiscence activities and cultural preservation.
Caremark Care Services – Provides care home services.
RMUK (Rastafari Movement UK) – Focused on tackling food injustice, social isolation, and health inequalities.
In One Piece – Hypnotherapy and career pathways for neurodiverse children.
South-East London Mind – Mindful Mum’s – Wellbeing group for mothers.
Lois Project Women’s Health Education Network – Women’s health education programs.
Red Ribbon Living Well Project – HIV wellbeing and support.
LBVN (Lewisham Black Voluntary Network) – Independent network of Black charitable service leaders and social entrepreneurs.
Families in Harmony – Kinship care support services.
Main conference section
The conference was opened by Lloyd Curtis, the MC for the day, who set the tone for an engaging and informative session. Following the introduction, IAG Chairs Michelle Nembhard and Stephen Lawrence presented the work of Lewisham IAG, highlighting their ongoing commitment to addressing disparities in mental health support for the Black community.
Key Sessions and Presentations
The program included several impactful sessions:
Maudsley Charity Update – Alice Casey from the Maudsley Charity delivered an overview of their programs, emphasizing community support and collaboration with local services.
SLAM Anti-Racism Training – Simone Garrison and Jide Ashimi facilitated a session on the delivery of anti-racism training within mental health services, highlighting systemic challenges and practical strategies.
Intercultural Therapeutic Services & LBVN – Beverley Weston and Susan Rowe explored intercultural approaches to therapy, focusing on culturally sensitive practices in mental health care.
A Service Users’ Journey – Katrina Desportes shared insights into the lived experiences of mental health service users, emphasizing the importance of understanding patient perspectives.
Keynote Address: Dr Malcolm Phillips – Kawaida Therapy – Dr Phillips delivered a compelling keynote, exploring strategies for supporting Black mental health, drawing on decades of experience in therapy and community engagement.
Panel Discussion – The conference concluded with a panel discussion featuring Dr Malcolm Phillips, Ade Odunlade, Katrina Desportes, Simone Garrison, Jide Ashimi, and Susan Rowe, providing a platform for dialogue and Q&A with attendees. This interactive session allowed for rich exchanges on best practices, policy challenges, and community-based solutions.
Networking and Community Engagement
After the formal sessions, the event transitioned to food and networking until 4:45 PM, providing attendees an informal space to connect with speakers, organizers, and service providers. The array of stalls allowed participants to take resources, engage with local initiatives, and explore volunteer and support opportunities.
Resources and Takeaways
Attendees left with valuable resources including:
Program booklets detailing session schedules and speaker bios.
Information on local mental health services and community organizations.
Contacts for advocacy, volunteering, and further training.
The conference highlighted the critical importance of community-driven approaches to Black mental health, emphasizing collaboration between service users, charities, and health professionals.
Absolutely! Let’s expand each key session with a more detailed, immersive narrative, based on what attendees experienced, including content, atmosphere, and insights shared. I’ll focus on the sessions you specifically attended, as reflected in the program.
The conference opened with an engaging presentation by Alice Casey from the Maudsley Charity. She provided attendees with a detailed overview of the charity’s initiatives to support mental health within the community, emphasizing collaborative approaches with local organizations.
Alice highlighted key programs, including outreach work for young Black adults, peer mentoring schemes, and community workshops aimed at reducing stigma around mental health. The presentation included personal stories from beneficiaries, which brought an emotional and relatable dimension to the discussion. Attendees appreciated the practical advice on accessing support services and the emphasis on culturally responsive care.
The room was attentive and responsive, with many participants asking thoughtful questions about how local services can be adapted to better meet the needs of diverse communities. This session set the tone for the day: action-oriented, community-centered, and deeply reflective of lived experiences.
2. SLAM Anti-Racism Training Delivery – Simone Garrison & Jide Ashimi (1:35 PM – 1:55 PM)
Next, Simone Garrison and Jide Ashimi led an interactive session on anti-racism training within mental health services. This session was highly participatory, with attendees invited to engage in discussion and reflect on their own experiences of race, discrimination, and systemic barriers.
The presenters outlined how structural racism affects mental health outcomes for Black communities and shared the SLAM model for anti-racism training. This included:
Identifying bias in clinical settings
Implementing inclusive language and practices
Encouraging allyship and peer accountability
One impactful moment was a case study exploring a young Black patient navigating mental health services. Attendees were prompted to consider interventions from multiple perspectives, sparking a dynamic discussion about equity and accessibility. Many participants noted that the session provided practical strategies for advocating within organizations, alongside the theoretical understanding of systemic inequities.
Following this, Beverley Weston and Susan Rowe from the Intercultural Therapeutic Services and Lewisham Black Voluntary Network (LBVN) presented a session focused on culturally adapted therapeutic approaches.
They emphasized the importance of recognizing cultural context in therapy, including family dynamics, faith, and community networks. Key highlights included:
Techniques for building trust with clients from diverse backgrounds
Examples of successful community-led interventions
Strategies for bridging gaps between statutory services and local Black-led organizations
The session included audience reflections on how cultural awareness can improve engagement, reduce dropouts, and foster sustainable mental health outcomes. Participants were particularly struck by the emphasis on strength-based approaches, focusing on resilience and community assets rather than deficits.
4. interview with the Interim CEO of SLAM (2:15 PM – 2:30 PM)
This session featured an interview with the Interim CEO Ade Odunlade of (South London and Maudsley NHS Foundation Trust), who spoke about:
Organizational vision for equitable mental health services
Current initiatives addressing disparities in care for Black communities
Collaborations with local groups, including Lewisham IAG and other voluntary networks
Commitment to anti-racism training and cultural competency across SLAM services
The interview was informal but informative, giving attendees a direct perspective on how policy and leadership decisions impact service delivery, especially in Black mental health provision. Participants had the opportunity to ask questions and engage with strategic priorities, bridging high-level management insight with the practical experiences discussed in other sessions
5. A Service Users’ Journey – Katrina Desportes (2:35 PM – 2:45 PM)
Katrina Desportes delivered a deeply personal session, sharing her journey as a service user navigating mental health systems. This session was emotionally resonant, offering first-hand insights into the challenges and triumphs of accessing support as a Black individual.
Katrina spoke about the importance of empathy, clear communication, and patient-centered care, illustrating the human impact behind policies and procedures. She also highlighted barriers such as:
Misdiagnosis and underrepresentation in mental health services
The impact of stigma within families and communities
Limited culturally specific support
Attendees responded with empathy and engagement, asking questions about how systems can better integrate service user feedback and what steps can be taken to empower marginalized voices in decision-making processes.
6. Keynote Address: Dr Malcolm Phillips – Kawaida Therapy (2:55 PM – 3:30 PM)
The day’s keynote by Dr Malcolm Phillips was a highlight, delivering a rich discussion on therapeutic practices that support Black mental health. Dr Phillips drew from his extensive experience with Kawaida Therapy, emphasizing holistic, culturally grounded approaches.
Key takeaways included:
The significance of community-driven therapy models
Integrating African-centered philosophies and traditions into mental health care
Addressing intergenerational trauma and systemic inequalities in healthcare
Dr Phillips used case examples, including stories of young people and families, to illustrate practical techniques and the positive outcomes of culturally aware therapy. The audience was deeply engaged, and the session included interactive Q&A, allowing participants to explore issues like accessibility, stigma, and collaborative interventions.
The conference concluded with a dynamic panel discussion, bringing together speakers from the day to reflect on key themes. The panel tackled questions such as:
How can mental health services better serve Black communities?
What role does community advocacy play in systemic change?
How can lived experience inform service design and delivery?
Panelists emphasized intersectional approaches, acknowledging the compounding effects of race, gender, socioeconomic status, and historical inequities. The discussion was lively and reflective, providing actionable insights for both practitioners and community members.
Reflection
Attending these sessions offered a deep, multifaceted understanding of Black mental health, blending theory, practice, and lived experience. Participants left with:
Practical strategies for culturally competent care
Greater awareness of systemic barriers and solutions
Inspiration to engage with their communities and advocate for equity
The conference successfully balanced education, empowerment, and practical application, making it a landmark event for mental health advocacy in Lewisham.
Conclusion
The Lewisham IAG Black Mental Health Conference successfully combined education, advocacy, and community engagement, creating a meaningful space for dialogue and connection. The event demonstrated that supporting mental health in Black communities requires both systemic change and grassroots collaboration a mission that Lewisham IAG continues to champion.
The poem is a spoken word piece from my upcoming poetry collection Unpaid, Unseen and Yet Unbroken (launching 2026).
This poem centres the lived experiences of ethnic and minority mental health carers, where they continue to show up, often without recognition, navigating systems that can feel complex and unresponsive.
The poem focuses on the quiet strength, shared knowledge, and collective care that exist within our communities.
In the spirit of PCREF, this work highlights the importance of listening to lived experience, valuing cultural understanding, and recognising community as a source of resilience and healing
March 21 marks the International Day for the Elimination of Racial Discrimination, which is a day recognised across the world to remember, reflect, and take action.
This day was established following the tragic events of the Sharpeville Massacre in South Africa in 1960, where peaceful protestors lost their lives while standing against injustice. It is a reminder of how far we have come, but also how far we still need to go.
Racism is not just something we read about in history. It continues to exist in our societies, often in ways that are subtle, systemic, and deeply embedded. It can affect people’s opportunities, their confidence, and their sense of belonging.
As a carer activist, I see the impact of this in mental health and support systems. When people feel unheard, misunderstood, or treated unfairly, it can have lasting effects on their wellbeing. Care should be equal, compassionate, and inclusive for everyone.
This day is not only about raising awareness, but about encouraging action. Each of us has a role to play in challenging discrimination and promoting understanding.
That might mean listening more carefully to others’ experiences, educating ourselves, speaking up when something isn’t right, or simply showing empathy in our everyday interactions.
Change doesn’t always come from big gestures. It often starts with small, consistent actions.
March 21 is a reminder, but I think the responsibility is ongoing.
The question is: what will you do to stand against racism?
If you’re a Black unpaid carer, you already know what it means to carry a lot responsibility, love, pressure, and often, silence. Whether you’re supporting a parent, partner, child, or friend, your role is vital. But too often, carers are left out of conversations about mental health, support systems, and services that are meant to help.
That’s why the upcoming Black Mental Health: Early Access, Prevention & Culturally Safe Pathways Conference is worth your attention.
This isn’t just another event. It’s a space designed with our communities in mind, where lived experiences are recognised, cultural understanding is centred, and real conversations can happen.
Why attend if you are a Black unpaid carers
Many Black carers face unique challenges:
Navigating services that don’t always understand cultural context
Experiencing stigma around mental health within families or communities
Feeling isolated, overwhelmed, or unsupported
Struggling to find information that reflects their reality
This conference creates a rare opportunity to step into a space where those experiences are not only acknowledged but taken seriously.
What you can expect
This event brings together professionals, community leaders, and people with lived experience to explore how we can improve access to mental health support and create safer, more inclusive pathways.
You’ll find:
Open conversations about care, connection, and change
Guest speakers sharing insight, expertise, and lived experience
Practical information on accessing support earlier and more effectively
A community atmosphere where you can meet others who understand your journey
There will also be food, a marketplace, and informal opportunities to connect—because sometimes the most powerful support comes from simply not feeling alone.
Why your voice matters
As an unpaid carer, your perspective is essential. Systems can’t improve without hearing directly from those who are navigating them every day.
Attending this conference is not just about receiving information it’s about:
Sharing your experiences
Influencing future services
Building connections with others in similar roles
Finding new ways to support both yourself and the person you care for
Taking a moment for yourself
Carers are often the last to prioritise their own wellbeing. This event is a chance to pause, reflect, and invest in your own mental health without guilt.
You deserve support. You deserve to be heard. And you deserve spaces that understand you.
Event details
Date: Saturday 25th April
Time: 1pm – 4pm
Location: Goldsmiths, University of London, Lewisham
Registration is simple via the QR code or online booking link.
If you’ve been waiting for a sign to step into a space that centres Black mental health and truly values carers, i think this is it.
Come along. Bring your experience, your questions, and your voice. You won’t be alone in the room.
I feel Unpaid carers play a vital role in supporting loved ones experiencing mental health challenges. Much of this caring happens quietly in homes, during sleepless nights, through appointments, advocacy, and everyday acts of protection and support.
For many carers from minority communities, this experiences also includes navigating the cultural understanding, language differences, and systems that sometimes do not always recognise or reflect communities. Despite the knowledge carers hold, I feel our voices can sometimes feel overlooked in those decisions about care.
I recently wrote and recorded a short spoken word poem titled “Nothing About Us Without Us.” This poem reflects a simple and important message: carers bring lived experience that should be included in conversations about mental health services.
The poem is taken from the book I am developing called “Unpaid, Unseen and Yet Unbroken”
Carers are not just supporters in the background. Carers can carry knowledge shaped by lived reality by caring, advocating, and supporting our families through complex systems.
The poem also speaks to the importance of co-production. When carers, communities, and professionals work together, services can become more understanding and culturally responsive, and equitable.
I think this message is especially relevant to ongoing work around the Patient and Carer Race Equality Framework (PCREF), which encourages meaningful involvement of people with lived experience in shaping mental health services.
The poem is a small creative contribution to that conversation. It invites us to reflect on a few simple questions:
Are carers from different backgrounds being listened to?
Are those lived experiences shaping services?
Are decisions being made with carers, not about them?
Listening to carers is not just a gesture of inclusion it can lead to better understanding, stronger partnerships, and better care.
If you would like to watch the poem, you can find the video here:
I hope my poem encourages reflection and conversation about how we can continue building services with communities, and not just for them.
A Caring Mind 