By Matthew McKenzie – Carer UK ambassador and volunteer
As proud volunteer with Carers UK and Carers Trust, and alongside healthcare teams in hospitals supporting unpaid carers and families. I want to take a moment to recognise the incredible contribution volunteers make every single day.
As we celebrate Volunteers’ Week 2026, across our communities, volunteers give their time, skills, compassion, and energy to help others, often without seeking recognition. Their impact is immeasurable.
For me, volunteering is about making a difference, no matter how small. Sometimes it is providing information and advice to a carer who feels overwhelmed. Sometimes it is speaking up for those whose voices are not being heard. Sometimes it is simply listening. These acts of kindness can change lives.
As carers, many of us already give so much of ourselves to support loved ones. Yet volunteering can also be a powerful way to create change, build connections, and strengthen our communities. It reminds us that we are not alone and that together we can make a positive impact.
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 had the privilege of appearing on BBC Radio 1Xtra Talks with Richie Brave to discuss my experiences as a Black mental health carer and long-standing volunteer at Carers UK, plus my groups supporting unpaid mental health carers.
My long standaing friend and carer peer Jo Lambert who specialises in hope and mental health accompanied me to the BBC studios
The programme focused on the realities of caring, the challenges many families face, and the importance of community support.
As someone who has supported family members with severe mental health needs and autism, I spoke about how I never initially saw myself as a carer. Like many people, I simply did what I felt was my duty as a son and brother. It was only later that I learned about the term “unpaid carer” and the support available through carers organisations and local carers centres.
During the discussion, I reflected on some of the challenges faced by Black carers, particularly Black male carers, who may feel pressure to remain strong and avoid speaking openly about their own mental health struggles. I shared how peer support groups, creativity and poetry helped me manage difficult emotions and find hope during challenging times.
I also spoke about the importance of identifying as a carer and seeking support early. Many people provide care out of love and responsibility without realising that help is available. Through my volunteering with Carers UK and work within hospitals and community settings, I continue to encourage carers to access support, connect with others and recognise that looking after themselves is just as important as caring for others.
I also read a poem from one of my books “Telling your story as a mental health carer”, you can view the poem below.
One of the strongest messages from the programme was that caring is about community. Whether through carers centres, voluntary organisations, healthcare services or local networks, nobody should have to face caring responsibilities alone.
I would like to thank Richie Brave and the BBC Radio 1Xtra team for creating space for these important conversations and for highlighting the voices and experiences of unpaid carers.
You can listen to the programme here:
BBC Radio 1Xtra Talks with Richie Brave – Caring Matters
Blog by Ethnic Mental Health Carer forum Chair – Matthew McKenzie
The May 2026 Ethnic Mental Health Carers Forum brought together carers, researchers, clinicians, community leaders, and representatives from mental health organisations across England. Although attendance was smaller than usual, the discussion was rich, honest, and highly informative, covering Mental Health Act reform, carers’ experiences, service inequalities, innovative approaches to care, and new research opportunities.
For those who were unable to attend, this blog provides a comprehensive overview of the meeting, including key presentations, audience questions, responses from speakers, and useful resources shared during the session.
Opening Remarks
As the chair, I welcomed attendees and outlined the agenda. The meeting focused on following:
Mental Health Act research and reform
Carers’ experiences supporting loved ones through detention
Findings from a major East Sussex carers research project
Resources for carers under the Mental Health Act
Electronic Health Records and future developments
Wider discussions on racial trauma, inequalities, and service improvement
The meeting also provided opportunities for networking, sharing lived experiences, and highlighting innovative projects happening across the country.
Research Study: Supporting a Loved One Through Mental Health Detention
Dr Maeve Conneely from University College London opened the meeting with a presentation on a new research study exploring the experiences of people who have been assessed or detained under the Mental Health Act, as well as the experiences of family members and carers who supported them through that process. The study has been commissioned as part of the wider programme of Mental Health Act reform and aims to understand how the current “Nearest Relative” provisions operate in practice before changes are introduced under the new legislation.
Dr Conneely explained that researchers are particularly interested in hearing from carers who were involved in supporting a loved one but who were not formally recognised as the “Nearest Relative” under the existing legal framework. She highlighted that these experiences are especially important because they can reveal where carers have been excluded from decision-making, denied access to information, or prevented from contributing to assessments despite playing a significant role in supporting the individual concerned. The study is open to anyone aged 16 or over who has direct experience of Mental Health Act assessments, detentions, Community Treatment Orders, holding powers, or related interventions, whether as a patient or as a supporter.
The research is linked to ongoing reforms of the Mental Health Act and seeks to understand how the “Nearest Relative” provisions currently operate before changes are implemented.
Who Can Take Part?
The study is looking for:
People who have been detained under the Mental Health Act
Family members and carers who supported someone during detention or assessment
Individuals who should have been involved as a nearest relative but were not
Anyone aged 16 or over with relevant experience
Interviews are conducted online and participants receive a £30 shopping voucher as a thank-you for their time.
Key Question from Participants
Q: Does the study include situations where someone should have been involved but wasn’t?
Response: Yes. Researchers are particularly interested in understanding experiences where carers or family members were excluded from decision-making processes despite playing a significant caring role.
Another Important Question
Q: Do carers need permission from the person who was detained before participating?
Response: No. Carers are sharing their own experiences and therefore only need to provide their own consent.
Discussion Themes
Participants highlighted:
Long-standing inequalities affecting Black communities under the Mental Health Act.
The overuse of psychiatric labels without sufficient exploration of trauma.
The need to understand why some individuals receive significantly different experiences of care, including access to private mental health facilities.
Concerns about trust in mental health services and the lasting impact of poor experiences across generations.
Several carers committed to taking part in the study to ensure lived experience informs future policy.
East Sussex Carers Research Project: What Carers Told Us
Age Angiolini presented findings from a year-long carers-led research project examining the experiences of family carers supporting people with serious mental illness across East Sussex. The study was developed in response to repeated concerns raised by carers at local support meetings and sought to capture their experiences of interacting with mental health services provided by the Sussex Partnership Foundation Trust (SPFT).
Although the research received 71 responses, representing only a proportion of the carers population in the region, the findings revealed a striking consistency in the challenges carers face. The survey explored themes including carers’ involvement in care planning, communication with services, consent and confidentiality, quality of care, crisis support, and priorities for improvement. Among the most significant findings were that 72% of carers reported being only sometimes involved or not involved at all in their loved one’s care, 73% felt services relied too heavily on carers, and 72% said they regularly had to advocate to secure appropriate support. The research concluded that many carers feel undervalued, excluded from decision-making, and left carrying significant responsibilities without adequate recognition or support.
The study gathered responses from carers supporting people with:
Schizophrenia
Bipolar disorder
ADHD
Autism
Complex neurodiverse conditions
Although the sample size was relatively modest, the findings revealed significant and consistent concerns.
Key Findings from the report
Carers Feel Excluded
72% reported being only sometimes involved or not involved at all.
73% felt services relied too heavily on carers.
72% said they had to advocate strongly to secure appropriate care.
Communication Failures
Participants reported poor communication between:
Mental health services
Assessment teams
Social services
Mental health liaison teams
Many carers described communications as inconsistent, unclear, and difficult to navigate.
Consent and Confidentiality
A recurring concern was that confidentiality procedures are often applied rigidly, preventing carers from sharing vital information during crises.
Carers argued that this can actively undermine effective care.
Quality of Care Concerns
The research found:
90% reported insufficient care.
Significant concerns around continuity of care.
A strong desire for dedicated care coordinators.
Widespread frustration with crisis services.
Crisis Support is Not Working
Many carers reported that:
NHS 111 is often inadequate for mental health crises.
A&E is frequently unsuitable for people experiencing mental distress.
Services remain reactive rather than preventative.
Calls for Change
Recommendations included:
Better crisis pathways
Improved coordination between services
More trauma-informed approaches
Greater therapeutic support
Increased family involvement
Better support for neurodiverse individuals
The presentation sparked considerable discussion, with many attendees noting that the findings reflected experiences they had encountered for years.
Carers Speak Out: Frustration, Trauma and the Need for Change
One of the most powerful aspects of the meeting was hearing directly from carers.
Several participants reflected on decades of involvement with mental health services and expressed concern that despite repeated reviews, consultations, and reforms, many of the same issues continue to persist.
Common themes included:
Institutional racism
Poor communication
Exclusion of carers
Over-medicalisation
Lack of trauma-informed care
Inadequate support during crises
A number of attendees emphasised that families often become de facto care coordinators, managing appointments, services, medications, and crises while receiving little support themselves.
One participant observed:
“They plan, medicate and treat. We care. Our worlds don’t meet.”
Others highlighted the impact of racial trauma and the way mental health services can fail to recognise the cultural context of distress.
Open Dialogue: A Different Way Forward?
Ren Reins introduced the concept of Open Dialogue, an internationally recognised approach to mental health care that focuses on relationships, networks, and collaborative conversations.
Open Dialogue aims to:
Bring families and professionals together
Reduce fragmentation between services
Focus on lived experience
Build trust
Improve recovery outcomes
Ren explained that major NHS-funded trials are underway and encouraged carers to learn more about the approach.
The discussion generated significant interest, particularly from attendees looking for alternatives to traditional medical models of care.
Nearest Relative Resources Project
Professor Judy Laing from the University of Bristol provided an update on an innovative project designed to support family members and carers who hold, or may hold, responsibilities under the Mental Health Act’s “Nearest Relative” provisions. Drawing on previous research with carers and mental health professionals, Professor Laing explained that many family members who find themselves in the Nearest Relative role often receive little information, guidance, or emotional support despite carrying significant legal responsibilities. In response, her team secured funding to develop a free, co-produced online resource that helps carers understand their rights, responsibilities, and options when supporting a loved one through mental health assessment, detention, and treatment.
Developed in partnership with carers, family members, mental health professionals, and organisations including Mind, Rethink Mental Illness, and Carers Trust, the website provides practical information, downloadable tools, guidance for conversations with professionals, and resources to help carers look after their own wellbeing. Professor Laing stressed that the project has been shaped directly by the experiences of those who have undertaken the role themselves, ensuring that the guidance reflects the realities and challenges carers face in practice rather than simply explaining legal processes.
The project emerged from research identifying significant gaps in information and support for people carrying out the “Nearest Relative” role.
What Has Been Developed?
The project has created a free online resource containing:
Information about legal rights
Guidance on conversations with professionals
Practical tools for meetings
Support for carers’ wellbeing
Resources explaining upcoming legal changes
The materials have been co-produced with carers and family members.
Questions Raised
How are diverse communities included?
Participants asked how the project ensures equity and accessibility.
Professor Laing explained that:
People from ethnic minority backgrounds have contributed to development.
Resources are being improved to increase accessibility.
Additional funding is supporting work around inclusion and accessibility.
Translation and alternative formats are being explored.
How is the project promoted?
Discussion focused on ensuring communities are aware of available support rather than resources existing only online.
Professor Laing outlined efforts involving:
Mind
Carers Trust
Mental health services
Local media
Carer forums
How will the new Nominated Person role protect carers who have traditionally been involved in supporting a loved one?
Several participants expressed concern that replacing the Nearest Relative role could unintentionally weaken the involvement of family members who have historically provided substantial support during periods of mental ill-health. Questions were raised about situations where a person may choose someone other than their primary carer to act as their Nominated Person, potentially reducing carers’ ability to access information or participate in key decisions. Professor Laing acknowledged that these concerns have been raised by many carers and explained that the practical details of how the new system will operate are still being developed. She stressed the importance of carers contributing their experiences to ensure that future guidance recognises the valuable role families often play in supporting recovery and maintaining continuity of care.
What support is available when professionals fail to recognise or understand carers’ legal rights?
Attendees also discussed the reality that many mental health professionals are not always familiar with the legal powers and rights associated with the Nearest Relative role. Participants described situations where carers were excluded from discussions, not informed of important decisions, or felt unable to challenge professional opinions because they lacked confidence in their understanding of the law. In response, Professor Laing highlighted that one of the main objectives of the Bristol resources project is to bridge this knowledge gap by providing practical tools, suggested questions, and clear explanations of carers’ rights. She noted that the project is also developing resources aimed at professionals themselves, with the goal of increasing awareness and ensuring that carers’ legal rights are better understood and respected across mental health services.
Attendees welcomed the commitment to increasing visibility.
Electronic Health Records and Future Developments
Dr Anna De Simoni, an Academic GP and Associate Professor of Primary Care at Queen Mary University of London, presented an early-stage research proposal focused on how electronic health records could be used to better understand and map the social support networks surrounding people living with multiple long-term health conditions.
Dr De Simoni sought direct feedback from carers to help shape the project before a formal funding application is submitted. She explained that while healthcare professionals can usually identify a patient’s next of kin and household members through existing GP records, they often have very limited understanding of the wider support networks that play a vital role in a person’s wellbeing.
These networks may include family members, neighbours, friends, faith groups, community organisations, carers, and others who provide practical and emotional support. The research aims to explore whether technology and electronic health records can help healthcare professionals better recognise these support systems and use that information to improve care planning, reduce unnecessary hospital admissions, and enhance quality of life for people living with complex health conditions.
The discussion generated considerable interest, particularly regarding:
Information sharing
Integration across services
Support for carers
Data protection concerns
Improving continuity of care
Several participants expressed enthusiasm about the potential benefits while also raising questions regarding privacy and access to NHS information.
Questions and Answers from Dr Anna De Simoni’s Presentation
Q: What problem is this research trying to solve? A: Dr De Simoni explained that healthcare professionals often know very little about the wider support network surrounding a patient. While medical records may identify a next of kin or people living in the same household, they rarely capture the full picture of who is actually providing practical, emotional, or day-to-day support. The project aims to better understand these social networks and use that information to improve care planning and patient outcomes.
Q: Who is the research aimed at? A: The initial focus is on people living with multiple long-term health conditions, including illnesses such as COPD and other complex health needs e.g mental health. The project seeks to understand how stronger recognition of support networks could improve quality of life, reduce hospital admissions, and support people to remain independent for longer.
Q: How would patients contribute information about their support network? A: The proposal includes the use of a Universal Care Plan through the NHS App. Patients would be able to enter information themselves about what matters to them, who supports them, how they prefer to be treated, and what should happen if their health deteriorates. This information could then be viewed and updated by relevant healthcare professionals.
Q: What role could carers play within the proposed system? A: Participants highlighted that carers often provide the majority of practical support but are frequently invisible within healthcare systems. The proposed approach could make carers more visible by helping professionals understand who is involved in supporting a patient and what role they play in maintaining wellbeing and independence.
Q: How will patient confidentiality and data protection be managed? A: Concerns were raised about privacy and the security of NHS data. Dr De Simoni explained that information governance, GDPR compliance, and data protection would be central to the project. Specialists in privacy and information governance would be involved to ensure that any information collected is handled safely, appropriately, and with proper consent.
Key Discussion: Why Are Carers Still Fighting the Same Battles?
A recurring theme throughout the meeting was the sense that many challenges identified today are the same challenges carers raised ten or twenty years ago.
Questions included:
Why are services still fragmented?
Why do carers continue to feel excluded?
Why are communication problems so persistent?
Why is trauma often overlooked?
Why do inequalities remain entrenched?
Participants reflected on whether the issue is primarily one of resources, leadership, service design, or culture.
Many agreed that meaningful change requires carers to remain actively involved in shaping policy and service delivery.
A carers support group recommended during discussion as a source of peer support and shared experience.
Final Reflections
The May 2026 Ethnic Mental Health Carers Forum highlighted both the challenges carers continue to face and the determination across the sector to improve outcomes.
From Mental Health Act reform and carers’ rights to innovative approaches such as Open Dialogue, the meeting demonstrated the importance of bringing together lived experience, research, policy, and practice.
Several speakers reminded attendees that change often begins with carers sharing their stories, participating in research, challenging poor practice, and helping shape future services.
The forum remains an important space where those voices can be heard.
By Matthew McKenzie – Chair of the Carers Hospital Discharge group
Hospital discharge remains one of the most critical and stressful moments for unpaid carers, patients and healthcare professionals alike. During the recent Carers Hospital Discharge Group meeting held in May 2026, professionals, carers, NHS leaders, hospital representatives and community organisations came together to discuss major developments affecting carers across London and beyond.
The Carers Hospital Discharge meeting runs every 2 months and for the month of May we discussed improving hospital discharge processes, strengthening carer identification, digital inclusion, community support and the growing role of technology in healthcare planning.
The blog update is for those unable to attend, here is a summary of the key discussions, presentations, questions and responses shared during the session.
Universal Care Plan Expansion Through the NHS App
One of the biggest updates came from NHS England, who shared exciting news about the expansion of the Universal Care Plan (UCP).
The new development allows patients and members of the public to begin creating their own Universal Care Plans directly through the NHS App. Previously, only clinicians could initiate many aspects of these plans.
NHS England explained that editable sections now include areas such as:
“What matters to me”
Communication preferences
Care and contingency plans
Personal support needs
Clinical sections, however, remain under healthcare professional control.
Updates described the project as a major milestone after years of discussion about allowing people greater control over their own care information.
Question from attendee:
“Will carers be able to input on behalf of their cared-for person?”
response from presenter:
At present, carers cannot directly complete plans on behalf of another person due to safeguarding and proxy access concerns. However, carers can still complete their own care contingency plans within the system.
It was explained that this means if a carer suddenly becomes unable to provide care, emergency services and healthcare providers would be alerted that a contingency plan exists.
They also noted that community organisations could potentially support individuals with completing plans, provided appropriate governance and data security arrangements are in place.
The discussion highlighted both the opportunities and challenges of balancing digital access with safeguarding responsibilities
*****
For more developments on the Universal Care PLan, I have provided the link below of the recent Webinar
New Research on Social Networks and Healthcare Support
Matthew McKenzie introduced an emerging research project led by Queen Mary University of London alongside several major universities including Harvard, Oxford and Warwick.
The project aims to explore how patients’ social support networks influence health outcomes, hospital admissions and long-term wellbeing.
Researchers are developing tools to map patients’ support systems, including:
Family carers
Friends
Peer groups
Community support
Online social networks
The project seeks to better understand how strong support systems can improve self-management and reduce avoidable hospital admissions.
Matthew explained that researchers are particularly interested in understanding:
Whether support network mapping would feel helpful or intrusive
How carers should be recognised within healthcare systems
How cultural differences affect support networks
What safeguards around privacy and consent are needed
The proposal sparked interest among attendees because it reflects a wider NHS shift toward community-based care and prevention.
NHS England connected the project to wider work around “family group conferencing,” where whole-family approaches are used to plan care and support more collaboratively.
NHS England’s Urgent and Emergency Care Strategy 2025/26
A major section of the meeting focused on NHS England’s emerging Urgent and Emergency Care (UEC) Strategy.
Matthew presented some notes on NHS England UEC outlining plans to:
Reduce avoidable hospital admissions
Deliver more care within communities
Expand digital healthcare access
Improve hospital discharge pathways
Strengthen operational efficiency
Key proposals included:
AI-enabled triage systems
NHS App navigation tools
Digitally coordinated urgent care
Expanded community-based treatment
Greater use of early intervention models
However, the discussion quickly moved toward the potential risks associated with rapid digital transformation.
Participants concerns:
Representatives covering Hospitals, raised important concerns about how discharge pressures could negatively affect carers.:
“If somebody urgently needs that hospital bed, the pressure becomes getting people discharged quickly. That may not always leave enough time to identify carers properly.”
They stressed that carer identification should happen throughout the patient journey not only during discharge.
They highlighted opportunities for identification during:
Outpatient appointments
Pre-assessment clinics
Routine hospital interactions
Concerns About Digital Poverty
Another major concern involved digital exclusion.
Participants warned that:
Older people
People with dementia
Individuals without smartphones
People facing poverty
Non-English speakers
Neurodivergent individuals
could all struggle if urgent care becomes too dependent on digital systems.
It was mentioned that meeting carers who still rely entirely on phone calls rather than online platforms and stressed the need for alternative accessible routes into care.
Others agreed and referenced an Equality Impact Assessment linked to the NHS 10-Year Plan, which explores risks around digital inequality and vulnerable groups being left behind.
A major highlight will be the attendance of Sir Ed Davey, who is himself a well-known advocate for unpaid carers due to his own lived experience caring for family members. His involvement is expected to help raise awareness of the challenges carers face daily.
KCN also spoke about Kingston Carers Network’s ongoing efforts to strengthen links with Kingston Hospital. The organisation already receives referrals through the hospital’s carers liaison department, helping unpaid carers access emotional support, information and practical guidance following hospital admissions or discharge.
However, KCN is now trying to expand its presence inside the hospital itself through more direct face-to-face outreach work. Plans are being discussed to establish regular information stands within hospital settings so carers can receive support earlier and more proactively.
KCN explained that while these conversations are progressing, coordinating regular in-hospital outreach remains challenging due to logistical pressures and scheduling issues. Despite this, the organisation continues to work closely with hospital teams to improve visibility and engagement with carers.
Beyond hospital settings, Kingston Carers Network continues to deliver several outreach programmes throughout the borough. Staff regularly attend local groups, community spaces and events to identify carers who may not realise support is available to them.
North Central London Carers Support Project
Eleanor updated the group on work taking place across:
Barnet
Camden
Enfield
Haringey
Islington
The project works in partnership with multiple NHS trusts and carers organisations across North Central London with the aim of creating a more consistent and coordinated approach to identifying and supporting unpaid carers.
At the centre of the programme is the development of a standard operating procedure for carers within hospitals and healthcare settings. The goal is to ensure carers are recognised earlier, referred more efficiently and supported more consistently regardless of which hospital or borough they engage with.
One of the project’s biggest developments has been the creation of a dedicated carers referral website. Eleanor explained that the system is designed to simplify the referral process for healthcare professionals. When a referral is submitted through the portal, the system automatically directs the carer to the appropriate local carers organisation based on their postcode.
The intention is to remove confusion for hospital staff while helping carers access support much faster.
Eleanor described the project as an effort to make support pathways:
Easier for professionals to navigate
More accessible for carers
Better integrated across borough boundaries
Less dependent on individual staff knowledge
A major focus of the project continues to be embedding carer awareness into everyday hospital practice.
Carer Awareness Training Expanding Across Hospitals
The team has made significant progress with carer awareness training sessions delivered across several NHS trusts.
Regular drop-in training sessions are now taking place with:
The Whittington Trust
The Royal Free
North London Mental Health Trust services
Eleanor shared that attendance at some sessions has now exceeded 40 healthcare staff members, which she described as a major success.
The training focuses on:
Identifying unpaid carers earlier
Understanding carers’ rights and needs
Improving referral pathways
Increasing staff confidence when supporting carers
Embedding carer recognition into routine clinical practice
Importantly, the project measures the effectiveness of these sessions using confidence ratings before and after training. Eleanor reported that most staff attending show at least a one- or two-level increase in confidence around identifying and supporting carers after participating.
North Central London’s Focus on Carers Week and Community Engagement
Preparations for Carers Week are also a major priority for the project.
The team plans to host information stalls and awareness events at several hospitals including:
The Whittington Hospital
University College London Hospital (UCLH)
Barnet Hospital
These events aim to:
Raise awareness of unpaid carers
Promote available support services
Encourage hospital staff to make referrals
Help carers connect with local organisations
Lewisham Council Developments
Updates from Lewisham was on the ongoing work taking place across Lewisham to improve support for unpaid carers, particularly through closer collaboration between hospitals, carers organisations and local commissioners.
A major development has been Lewisham Hospital’s involvement in the South East London pilot programme focused on creating a standard operating procedure for carers across NHS trusts. The pilot aims to improve consistency in how carers are identified, supported and referred within hospital settings.
It was explained that Lewisham Hospital has been working closely with Imago, the borough’s commissioned carers support provider, to strengthen partnerships with hospital nursing teams and improve awareness of carers across wards and services.
Particular emphasis is now being placed on:
Increasing carer awareness training
Improving communication between services
Embedding carer identification into routine hospital practice
Strengthening links between healthcare and community support
Inspired by discussions during the meeting, it was also highlighted plans to explore integrating carer identification into regular auditing and review processes within hospital settings similar to initiatives already underway in other trusts.
Redesigning Lewisham’s Future Carers Service
One of the most significant updates involved the redesign of Lewisham’s carers support service model.
They shared that the current commissioned contract for carers services is due to end in January 2027, and work is already underway to shape the next phase of support provision.
Importantly, unpaid carers themselves are playing a central role in developing the new model.
A series of co-production sessions has been held with carers across the borough to ensure their lived experiences directly influence future service design. These discussions are helping shape priorities around:
Access to support
Communication with carers
Outreach and identification
Emotional wellbeing services
Practical support needs
Hospital discharge experiences
The borough hopes to move into procurement for the redesigned service later this year.
Carers Hub Lambeth
Carers Hub Lambeth shared an update on the organisation’s ongoing work supporting unpaid carers across King’s College Hospital and Guy’s and St Thomas’ NHS Foundation Trusts.
Although the current hospital carers project funding has been extended for an additional six months, Jen explained that the programme is now approaching its final phase, with funding currently due to end in September 2026.
As a result, the team’s main focus is now on ensuring hospitals become as self-sufficient as possible in identifying and supporting carers once the dedicated project ends.
Expanding Carer Awareness Training
A major priority for Lambeth Carers Hub is expanding carer awareness training for healthcare professionals.
It was explained that the organisation has:
Increased training sessions from once to twice monthly
Begun arranging bespoke sessions with individual hospital teams
Expanded engagement with primary care networks
Updated training materials to address barriers to carer identification
The training aims to help healthcare staff:
Recognise unpaid carers earlier
Understand carers’ support needs
Improve referral pathways
Build confidence in conversations with carers
Embed carers into routine healthcare practice
Carers Hub Lambeth acknowledged that while training sessions often generate an immediate increase in referrals, maintaining long-term momentum remains challenging.
It was mentioned that a familiar pattern where professionals attend training, referrals increase temporarily, and then gradually reduce again as competing clinical pressures take over.
Because of this, the organisation is now trying to better understand:
Why carers continue to be missed
What barriers staff face in identifying carers
How carer awareness can become part of everyday practice rather than an additional task
This reflects a wider challenge discussed throughout the meeting — ensuring carer support becomes embedded within healthcare systems rather than dependent on individual staff enthusiasm.
Embedding Carer Recognition Into Everyday Hospital Practice
One of the most practical discussions came from GESH update on integrating carers into routine hospital auditing processes.
St George’s and Epsom and St Helier Hospitals are now:
Adding carer identification questions into ward audits
Including carers within routine quality checks
Training volunteers to identify carers on wards
Embedding carers into “business as usual” practice
Wendy also spoke extensively about the NHS “Reasonable Adjustments Digital Flag,” a major NHS initiative designed to ensure patients’ accessibility needs are recognised across services.
The system aims to help hospitals and GP services better identify:
Communication needs
Disabilities
Neurodivergence
Mental health conditions
Carer-related support needs
The long-term goal is for healthcare systems to automatically recognise and share reasonable adjustment requirements across services.
Final Reflections
The meeting demonstrated both optimism and concern about the future direction of health and social care.
There was strong agreement that:
Community-based care is necessary
Earlier intervention can prevent hospital admissions
Carers must be identified earlier
Digital systems offer opportunities
However, participants repeatedly stressed that healthcare transformation must not leave vulnerable people behind.
Carers remain central to safe discharge, patient wellbeing and long-term community support. As NHS services increasingly move toward digital and community-led models, ensuring carers are recognised, supported and included will remain critical.
The next Carers Hospital Discharge Group meeting is expected to take place in July 2026.
Update by Matthew McKenzie – Chair of South London Mental Health Carers Forum
The South London Mental Health Carers Group met for the month of May for a wide-ranging and thoughtful discussion covering carers’ experiences, mental health support systems, involvement opportunities, and an important research presentation focused on support networks and long-term care.
The group covers areas of Lewisham, Southwark, Lambeth & Croydon, although Mental Health Carers from outside those areas are welcime to attend
The session brought together carers, advocates, involvement leads, and guest speaker Dr Anna De Simone from Queen Mary University of London. As always, the discussion highlighted both the challenges carers continue to face and the value of shared lived experience and peer support.
Opening Discussions: Challenges in Mental Health Care Systems
The meeting began with carers sharing experiences of navigating mental health services for loved ones with complex needs. There was extensive discussion around:
difficulties accessing appropriate placements,
safeguarding concerns,
discharge planning,
lack of continuity between NHS trusts and local authorities,
and ongoing challenges around funding responsibility between different services.
A recurring issue raised was the pressure on inpatient beds and the concern that discharge decisions can sometimes feel driven more by system pressures than by clinical readiness. Carers spoke openly about the emotional impact of repeatedly having to advocate for vulnerable loved ones while navigating fragmented systems.
There was also discussion around the importance of carers being recognised and included in communication and planning processes. Participants highlighted how carers are often the people most aware of deterioration, risks, or safeguarding concerns, and how vital it is that services engage meaningfully with families and informal supporters where appropriate.
Despite frustrations, carers also acknowledged examples of good practice and supportive professionals within mental health services. Several attendees noted that they had seen gradual improvements in carer involvement and listening exercises within parts of South London and Maudsley NHS Foundation Trust (SLAM), particularly in Lambeth.
Updates on Carer Involvement and Support Activities
The group received updates from carers and representatives involved in local mental health engagement work and carers’ organisations.
Carers Week Activities
Karen from Carers Hub Lambeth shared details of upcoming Carers Week activities, including:
outreach events,
wellbeing sessions,
information stalls,
and activities for both adult and young carers.
The events aim to provide carers with opportunities for support, networking, practical advice, and wellbeing activities.
There was also discussion around changes and developments within SLAM involvement structures, including:
continuation of family and carers meetings,
changes to involvement leads,
and ongoing reviews of the involvement register.
Attendees reflected positively on the increasing recognition of carers’ voices in some forums and clinical meetings, while acknowledging that there is still much work to do to ensure consistent involvement across all boroughs and services.
Guest Presentation: Mapping Patient Support Networks
The second half of the meeting focused on a presentation from Dr Anna De Simone, GP and Associate Professor of Primary Care at Queen Mary University of London.
Anna introduced a proposed research project exploring how healthcare systems might better understand and map patients’ support networks using electronic health records and social network tools.
The research proposal focuses particularly on patients with long-term conditions such as COPD (Chronic Obstructive Pulmonary Disease), many of whom also experience multiple additional health conditions and varying levels of social isolation.
The Core Idea
Anna explained that while healthcare professionals can currently access limited information such as next of kin or household members, they often lack a fuller understanding of:
who actually supports the patient,
how reliable that support is,
whether support networks are connected or fragmented,
and how socially isolated a patient may be.
The proposed research would explore whether creating visual “maps” of support networks could help:
improve care planning,
reduce crises,
improve coordination between services,
and enhance patients’ quality of life.
The project would also examine how social prescribing, community services, online support groups, and carers fit into these wider support networks.
Carers’ Feedback on the Research Proposal
The discussion following Anna’s presentation was extremely rich and constructive, with carers offering both enthusiasm and important cautionary perspectives.
Strong Support for the Concept
Many attendees felt the project addressed an important gap in healthcare planning. Several carers spoke about how informal support networks had been essential to helping them or their loved ones survive periods of crisis.
Participants agreed that professionals often underestimate the role played by:
friends,
neighbours,
online communities,
peer groups,
and unpaid carers.
The ability to visualise these networks was seen as potentially valuable for both professionals and patients themselves.
Importance of Non-Traditional Support Networks
A strong theme throughout the discussion was that support does not always come from family.
Some carers explained that family relationships can sometimes be unsafe or abusive, and that support may instead come from trusted friends, neighbours, carers’ groups, or online communities.
The group stressed that any future system should avoid assuming that family automatically equals safety or support.
Online Communities and Digital Support
Participants also highlighted the increasing importance of online support systems.
Several carers explained that:
Zoom groups,
Facebook communities,
online peer support,
and digital communication can provide essential social connection, especially for disabled or isolated people.
One participant noted that online support networks had directly helped them access practical support and reduce isolation when physical mobility was limited.
At the same time, carers cautioned that not everyone has equal access to digital services. Concerns were raised about:
digital exclusion,
accessibility barriers,
lack of digital skills,
and the risk of widening inequalities.
The importance of offering both digital and non-digital forms of support was strongly emphasised.
Privacy, Consent, and Mental Health
Carers also discussed potential challenges around privacy and consent, particularly for people experiencing paranoia or severe mental illness.
Some attendees noted that patients may not always feel comfortable sharing details about their social networks, and that trust and safeguarding would need to be central to any future system.
There was discussion about the delicate balance between:
confidentiality,
safety,
carer involvement,
and patient autonomy.
Role of Social Prescribers
The group generally agreed that social prescribers could play an important role in helping patients map support networks, because they often have more time and a stronger focus on community support than standard GP appointments allow.
However, concerns were raised about long-term funding and sustainability for social prescribing services.
Looking Ahead
Anna thanked the group for their detailed feedback and explained that carers’ insights would help shape the next stage of the research proposal before submission later this year.
There was strong interest from attendees in remaining involved should the project move forward, particularly around future patient and public involvement opportunities.
The meeting once again demonstrated the depth of knowledge, experience, and expertise held by unpaid carers. The discussion reflected not only the challenges carers continue to face, but also the importance of ensuring carers are recognised as essential partners in both healthcare delivery and future research.
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.
Feeling connected is important especially for those who spend much of their time caring for others. Healthwatch Bromley is hosting a special interactive session designed to explore connection and combat loneliness in our community.
This session will give unpaid carers and community members the chance to:
Engage in a thoughtful group discussion about building connections.
Learn practical strategies to strengthen relationships and reduce loneliness.
Hear insights from guest speaker Helayna Jenkins, who brings experience and inspiration to the conversation.
Enjoy light refreshments while connecting with others in similar circumstances.
Whether you’re a carer seeking support, someone looking to expand their social network, or simply interested in meaningful conversations, this event offers an open, welcoming space to share, listen, and grow stronger together.
Don’t miss this opportunity to connect and make a difference in your community. Register for free today and be part of the conversation.
Mental Health Awareness Week 2026 over in the UK runs from Monday 11 to Sunday 17 May, and the theme is Take Action. I know firsthand how challenging it can be to look after someone while managing your own wellbeing.
Mental Health Foundation is the main charity behind Mental Health Awareness Week in the UK, but there are many other important organisations playing key roles in mental health support, advocacy, treatment and public awareness.
So for the week of this blog, it is a reminder that even small steps can make a big difference, whether it’s checking in on a friend, practicing self-care, or seeking support from local and national organisations.
As a reminder Carers often put themselves last, but protecting your own mental health is essential and taking action starts with acknowledging that you deserve support too.
During this Mental Health Awareness Week, there are many organisations and local NHS carer support services provide invaluable guidance, counselling, and resources for unpaid carers.
The theme is “Every action counts”. From reaching out to your community, to joining peer support groups, to simply taking a moment for yourself.
Watch my video above for practical tips, encouragement, and ways to take action for your mental health and the wellbeing of those you care for.
Let’s work together to make mental health a priority for everyone, today and every day.
Additional Resources for Carers and Mental Health Support
Carers UK – Advice, support, and information for unpaid carers across the UK. https://www.carersuk.org
The Carers Trust – Local carer centres, counselling, respite, and practical support. https://www.carers.org
Mental health carers often navigate a system that feels fragmented, leaving them unheard and unseen. My new spoken word poem, “Who is”, explores this reality asking who is believed, listened to, supported, or left behind when the challenges of mental illness take hold.
Taken from my upcoming poetry collection, Unpaid, Unseen and Yet Unbroken (launching 2026), this piece reflects the experiences of unpaid carers, particularly from ethnic minority communities, who face the added burden of navigating a system that often overlooks their voices.
Through poetry, I hope to open a conversation about the importance of listening, understanding, and valuing carers’ lived experiences.
A Caring Mind 