Tag Archives: Health Equity

Advancing Race Equity Across London’s Mental Health Trusts

On Wednesday 3 June 2026, colleagues from all eight London Mental Health Trusts, alongside carers, service users, community organisations, researchers, regulators and system leaders, gathered at ISH Venues in central London for the Pan London Patient and Carer Race Equality Framework (PCREF) Conference.

Chaired by Erica deti from North East London NHS Foundation Trust (NELFT), the conference provided a unique opportunity to showcase progress, share learning and strengthen London’s collective commitment to race equity within mental health services.

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

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

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

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

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

1. Commitment and Foundations

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

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

2. Capability and Awareness

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

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

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

3. Embedding Anti-Racism into Practice

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

Key areas of work include:

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

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

East London NHS Foundation Trust (ELFT)

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

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

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

Building the Strategy Through the “Big Conversation”

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

What People Told ELFT

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

The engagement process highlighted several key themes:

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

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

The ELFT Strategy 2026–2031

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

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

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

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

Priority Three: Advance Equity in All We Do

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

By 2031, ELFT aims to ensure that:

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

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

West London NHS Trust

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

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

Why This Work Matters

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

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

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

Co-produced Learning Spaces

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

The workshops encouraged participants to discuss:

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

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

Wider PCREF Implementation at West London NHS Trust

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

Key achievements included:

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

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

Key Learning from West London NHS Trust

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

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

Oxleas NHS Foundation Trust

Reducing Inequalities in Restrictive Practice: From Data to Action

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

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

Listening to Staff and Stakeholders

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

The consultation identified two immediate workstreams:

  1. Debrief and Escalation
  2. Trauma-Informed Care

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

Highest-Ranked Priorities

The most frequently identified priorities included:

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

Workstream One: Debrief and Escalation

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

The framework was organised into three stages:

Before Escalation

Staff are encouraged to:

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

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

During Escalation

The presentation highlighted the importance of:

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

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

After the Incident

Learning after incidents was considered equally important.

Actions included:

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

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

Next Steps

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

Planned Actions

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

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

Learning Across London

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

Areas identified for collaboration included:

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

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

North East London NHS Foundation Trust (NELFT)

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

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

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

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

Carer Spotlight

Matthew McKenzie and PCREF Carer Poetry

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

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

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

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

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

Central and North West London NHS Foundation Trust (CNWL)

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

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

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

Building Trust Through Co-Production

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

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

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

Key Stages of the Journey

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

The Black Men’s Wellbeing Festival 2026

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

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

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

North London NHS Foundation Trust

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

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

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

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

Strategic Ambitions and Organisational Change

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

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

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

Building on Existing Foundations

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

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

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

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

National Ethnic mental health Carer Forum : March Update 2026

Chaired by Matthew McKenzie – Carer Activist

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.

Nilaari delivering hope

Q&A Section : From Evidence to Frustration

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.

Ethnic mental health Carer Forum Update July 2025


Author: Matthew McKenzie

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

LARCH Annual Conference 2025: Advancing Anti-Racism in Health & Care

On March 7, 2025, The Foundry in London became the epicenter of a powerful movement towards racial equity in healthcare.

The London Anti-Racism Collaboration for Health (LARCH), Health Innovation Network and Race Equality Foundation hosted their Annual Conference and Learning Event, bringing together thought leaders, policymakers, and community advocates dedicated to dismantling systemic racism in health and social care.

Setting the Stage: A Call for Change

The event was chaired by Dame Marie Gabriel, a pioneering advocate for equity in the NHS. Kicking off with opening remarks from Dr. Debbie Weekes-Bernard, Deputy Mayor for Communities & Social Justice, the conference established a clear message: structural racism in healthcare is a pressing issue that demands systemic solutions.

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