Ethnic mental health Carer Forum Update September 2025

By Matthew McKenzie – Facilitator of National ethnic mental health carer forum & Triangle of Care – Community group

The National Ethnic mental health Carers Forum (chaired by myself) met for September bringing together various stakeholders, including carers, healthcare professionals, and community representatives, to address issues related to race, equity, and care services. Key discussions included technical setups, addressing ongoing challenges in healthcare for marginalized communities, and emphasizing the importance of incorporating diverse perspectives in developing solutions for better patient experiences.

The importance of data collection, representation, and systemic change catalyzed by community engagement were recurring themes. Presenters highlighted various initiatives, including the Patient Carers Race Equality Framework (PCREF), aimed at improving services for ethnic minority populations. Questions from attendees focused on ensuring inclusivity and effective communication within the healthcare framework.

Improving Ethnic Minority Healthcare Access

The meeting introduced participants to the Patient Carer Race Equality Framework (PCREF) initiative, focusing on improving outcomes for patients and carers from ethnic minority backgrounds.

Wayne Farah, an associate at the Institute of Race Relations, presented resources available to support understanding and addressing racism in healthcare, including statistics, healthcare access issues, and practical resources for carers.

Wayne Farrar opened his talk by drawing on both professional expertise and personal experience. He explained the history of the IRR, its focus on amplifying marginalised voices, and the resources it provides such as IRR News and the Calendar of Racism and Resistance. His main theme was the persistence of institutional racism in the NHS and wider systems, which he linked to the legacy of “race science.” He argued that current approaches, like dashboards, metrics, and inquiries, often mask the real problem by treating health inequalities as technical or biological issues rather than outcomes of racism and discrimination.

Wayne used examples such as the Windrush scandal to show how bureaucracy allows injustice to persist, describing this as the “banality of evil.” He also shared personal stories about advocating for his wife in the healthcare system, emphasising that carers need to be strong and assertive because no one cares more about their loved ones than they do. He concluded with reflections on resilience, including how he has reframed being stereotyped as an “angry Black man” into a form of empowerment to push harder for change.

The discussion that followed showed how deeply Wayne’s talk resonated. Carers praised the presentation’s directness and asked if Wayne had worked with PCREF (Patient Carer Race Equality Framework). Wayne said he had some involvement through the NHS Confederation and noted that PCREF could more strongly address issues like “racecraft.” Len raised a challenge about Wayne’s framing of race as a social construct, pointing out that racism feels very real to victims. Wayne clarified that he meant race has no biological basis in medicine, but racism is a social process with very real consequences. Another carer shared her experience of being stereotyped by NHS staff about her risk of diabetes despite not following the assumed “Asian diet,” saying Wayne’s points about race-based assumptions resonated strongly with her. Another carer also reflected on how stereotyping affects healthcare, while other participants spoke of how powerful and validating Wayne’s talk had been.

Overall, Wayne’s session combined history, critique of systemic racism, and practical advice for carers. The Q&A highlighted both curiosity about frameworks like PCREF and the need to address the tension between race as a social construct and racism as lived reality. Many participants expressed gratitude, saying the presentation was direct, powerful, and reflected their own experiences of stereotyping and inequality in healthcare.

Carer Questions:
A carer challenged Wayne’s statement that race is a social construct, saying that while it may not be biological, racism is very real for victims and has a lived history.

Wayne’s Response: He clarified that he meant race has no biological or scientific basis in medicine or anthropology, but racism is very real as a social process. He emphasised that health disparities (like hypertension in Black communities or diabetes in South Asians) are not caused by race itself, but by racism, discrimination, and lack of access to appropriate services. He wanted participants to be cautious when institutions frame disparities as inherent to race rather than outcomes of racism.

Matthew’s Question (Forum Lead):
I asked what role the Royal College of Psychiatry should play in countering race science, given its influence over professionals and carers.

Wayne’s Response: He said that was the aim of PCREF, but royal colleges were historically rooted in race science, which is why good intentions are not enough. He criticised the frequent use of “inquiries” into deaths of Black men in mental health care as ways of delaying real change. He argued that systemic neglect persists, and professional bodies must take responsibility rather than congratulate themselves for minor improvements.

Addressing Racism in Healthcare Systems – Norfolk and Suffolk NHS Foundation Trust

As usual Mental Health trust representatives including involved carers update the national ethnic carer forum on developments.

Cath explained that race equity is now a strategic priority for NSFT, which serves a largely rural and non-ethnically diverse population where explicit racism is still present in communities and services. Under the leadership of their Chief Executive, the trust has set out a clear strategy built on improving health, care, culture, and value. To deliver this, NSFT has launched 12 large-scale change programmes, one of which previously focused broadly on inclusion but has now been reframed specifically around race equity. Importantly, this work is being split equally between workforce development and PCREF, so that both staff experiences and service-user outcomes are addressed.

She acknowledged that NSFT is still behind other trusts in terms of PCREF implementation. Their original PCREF plan, approved in spring, has already been recognised as inadequate and is now under review. Cath noted that this review will lead to a more outcomes-focused approach rather than process-driven work. A dedicated health equity and PCREF team is also being created as part of the trust’s corporate redesign, reflecting a recognition that they lacked capacity and expertise in this area. The revised plan is due to go through governance for approval in November.

Annie, speaking as a carer representative, highlighted how important it is to be “at the table rather than on the menu.” She acknowledged she can be seen as “aggressive” or “demanding,” but stressed that Cath had helped give her the confidence to challenge constructively at board level. Annie linked IRR advice about building relationships with senior managers to her own experience, saying that having a place at decision-making tables empowers carers to make sure the realities faced by ethnic communities are heard. She also reflected on her personal motivation: as the mother of a mixed-heritage son, she feels a responsibility to speak up on what ethnic families experience in practice.

PCREF Implementation and Progress Update – north london nhs foundation trust

The next NHS trust to present to my forum was North London NHS FT, which covers 5 London boroughs due to the merger of 2 large NHS mental health trusts.

Samina Arfan, Associate Director for Equality, Diversity and Inclusion at North London Foundation Trust (NLFT), explained that her trust was created from the merger of Camden & Islington and Barnet, Enfield & Haringey trusts. Unlike some early PCREF pilot sites, NLFT only began its PCREF journey in late 2023. The first step was setting up governance structures, securing an executive lead at board level, and creating an EDI programme board. Alongside her colleague, Jordel Akinola, she led engagement events in local boroughs to ensure strong co-production with communities. These early steps gave the trust a foundation to begin shaping its PCREF plan

A major priority has been addressing inequalities in mental health detention and restraint practices. Samina shared data showing Black communities are disproportionately detained under section 2 of the Mental Health Act, while Asian people are underrepresented. Restrictive practice data revealed that Black men were more likely to experience prone restraint, which prompted a quality improvement project across wards. This included improving the accuracy of ethnicity recording, since too many patient records lacked this information. Workforce diversity was highlighted as well—NLFT has a diverse staff, but the data still shows ethnic disparities in care outcomes, making it vital to view restraint and detention through a racism lens

She also described broader initiatives: building a PCREF dashboard to apply a race lens to existing NHS targets; launching co-production projects with children and young people, including multi-faith engagement in mosques, synagogues, and youth boards; and expanding the role of peer workers, nearly half of whom are from ethnic minority backgrounds. However, she admitted feedback systems like the Friends and Family Test are not capturing enough voices from diverse communities, so peer workers and advisory groups are essential in bridging that gap

Samina emphasised the role of the PCREF advisory group, which brings together service users, carers, voluntary sector organisations, and staff to scrutinise trust data and guide projects. She stressed transparency by involving the people actually delivering the work, holding them accountable, and ensuring that community voices influence outcomes. She also acknowledged challenges: national NHS changes and funding cuts risk diluting PCREF work, so she is advocating for a North London PCREF collaborative to align efforts across local mental health providers and share learning. Finally, she noted that patients and carers with long-term involvement must be given a stronger seat at the table, as their lived experience is crucial for shaping change.

After Samina’s presentation, a carer spoke about her frustration at struggling to access clear information on the trust’s anti-racist strategy. She explained that despite being part of the Haringey Service User and Carer Forum for many years and emailing various staff, she had received little response. The carer felt this was a missed opportunity, as service-user and carer forums could be powerful spaces for embedding anti-racist approaches. She emphasised that these groups already hear many concerns from families and communities, so they should be central to shaping change, especially given the NHS’s recent shift towards more community-based mental health services

Samina acknowledged th carer’s concerns and agreed that stronger links to service-user and carer forums across the five boroughs were vital. She said the challenge since her colleague left was not a lack of will but a drop in capacity, as her EDI team had been reduced in size. To address this, she planned to personally attend service-user forums (even if only once a quarter) to ensure communication wasn’t lost and updates reached carers directly. She stressed it was about embedding the work into the system, not leaving it solely to her or the EDI team. Samina invited the carer to connect with her offline, exchange emails, and join the PCREF advisory group, ensuring carers and service users from each borough had representation. She also underlined that community connections must feed upwards into trust decision-making, rather than being siloed

Advancing Carer Equality Initiatives – Triangle of Care & PCREF, Carers UK Black History month

I closed the session by giving a short update on my wider work around carers and PCREF. I explained that I chair the Triangular Care Community Group, which meets every two months and focuses strongly on carers’ mental health. This group is working on how Triangular Care Standards can be linked with PCREF implementation, making sure that carers, especially from minority backgrounds are properly included in the conversation. I also mentioned that Carers Trust is circulating a draft for feedback, and encouraged participants to get involved and share their views within the next week

I also highlighted my role as an volunteer & ambassador with Carers UK, where I help on raising the profile of unpaid carers. I flagged upcoming events, including a Black History Month event on 13th October, organised by Carers UK, where I will be speaking at.

If you are a carer or minority carer, please book for the online share & learn session below.

Carers UK – Black History month event booking form

I encouraged attendees to use such opportunities to ask “the magic questions” about how influencial organisations will keep its focus and inclusion on minority carers

I then reminded everyone that collaboration across groups whether through PCREF forums, Carers Trust, or Carers UK, that it is vital to strengthening the voice of carers and ensuring equality.

I confirmed that the next forum meeting would be on 31st October and encouraged participants to spread the word so more carers, minority or otherwise, could join in the conversation.

Summary of the Ethnic Carers Forum Meeting – September

Multi-Angle Analysis

The meeting illustrated the deep-seated complexities of race and healthcare, revealing how institutional frameworks and practices intersect to affect service delivery and patient care. By advocating for the inclusion of diverse perspectives and leveraging collected data, participants aim to challenge systemic barriers that contribute to inequitable health outcomes. The call for community engagement underlined the need for actionable collaborations that transcend traditional healthcare models.

Technical Terminology

PCREF (Patient Carer Race Equality Framework): A strategic framework aimed at addressing health disparities experienced by marginalized racial and ethnic groups.
Race Science: Historical studies that claimed race was a biological determinant influencing health outcomes, which is now widely discredited.
Weathering: A term that describes the cumulative impact of social, economic, and environmental stressors on health outcomes over time.

Key Insights

The forum highlighted that systemic racism impacts health behaviors and access to resources, necessitating a reevaluation of how healthcare frameworks can better address the roots of health disparities.
There remains a critical gap in understanding the complexity of health outcomes related to racial and ethnic backgrounds, underscoring the need for comprehensive retraining of health professionals regarding these issues.
Actionable strategies for engagement with marginalized communities must be prioritized, as this will enhance the contextual understanding of healthcare needs.
Collaboration between organizations, local communities, and health professionals is essential for effective reform in healthcare delivery systems.
Continuous dialogue and reflective practice can lead to transformative outcomes within healthcare services.

FAQ

1. Why is the discussion surrounding race so critical in healthcare contexts?
It is essential to address the impact that systemic racism has on health outcomes, access to care, and the overall well-being of marginalized communities. Understanding this context helps healthcare systems provide more equitable and effective care.

2. What is the significance of the Patient Carers Race Equality Framework (PCREF)?
The PCREF serves as a guiding structure to ensure that care systems consider the specific needs of ethnic minorities, aiming to reduce health disparities and improve outcomes through focused strategies and policy implementations.

3. How can community engagement improve healthcare services?
Engaging with communities allows healthcare providers to gain invaluable insights into the unique challenges they face, leading to tailored interventions that address these barriers effectively.

4. What steps can healthcare professionals take to address institutional racism?
Healthcare professionals should actively engage in ongoing training regarding cultural competency, advocate for equitable policies, and ensure that their practices do not perpetuate discrimination.

Interview with Elsie

Caring for a loved one is a role that often goes unseen and undervalued. In this interview, Matthew McKenzie speaks with Elsie, a 73-year-old carer and activist, about her journey as an unpaid carer, the challenges she’s faced, and her mission to support others walking the same path.

Standing Strong for Carers’ Rights

Elsie refuses to be silenced. Though at times labeled as a “persistent, unreasonable complainer,” she sees her persistence as a duty to her loved ones and to other carers. For her, raising concerns is about advocating for better care and systemic improvements.

Her advice to carers is simple but powerful:

Trust your instincts.
Don’t give up until your loved one gets the right care.
Learn about carers’ rights and stay engaged in decisions.

Finding Strength in Words

In a deeply moving moment, Elsie shared a poem she had written for the Book of Remembrance at Honor Oak Crematorium, in memory of her son. Her words reflect not only grief but also strength, love, and the motivation to keep advocating for change.

You’ll always be our hero.
Although you’re gone, we’re not apart.
Our love for you keeps going,
It stays deep within our hearts.

Football, food and fishing
Were what it was all about.
Blue is the color,
Come on, you lions, to shout.

Understanding Community: The Foundation of Connection

By Matthew McKenzie – A Caring Mind

Community is a word we hear often, but its true meaning and significance can sometimes be overlooked. At its core, a community is a network, a web of relationships built on shared identity, common themes, and mutual trust. Communities are formed when people come together, united by a sense of belonging and shared responsibility. This sense of belonging is not just about being part of a group; it’s about feeling valued, having a purpose, and working towards common ideals.

This blog is a transcript of the video below.

Communities exist in many forms. The most immediate and intimate is the family, where the seeds of unpaid caring are often sown.

Continue reading →

Breaking Barriers: Supporting People with Serious Mental Illness to Access Lung Cancer Screening

Post By Matthew McKenzie – National Cancer Carer forum

For people living with a serious mental illness (SMI) such as schizophrenia, bipolar disorder, or psychosis, cancer remains one of the leading causes of premature death. In South East London, lung cancer is particularly devastating, with mortality rates highest among this group.

But there’s good news: projects are now underway to change this. Click on poster for more details

Why this matters

Early detection can make all the difference in lung cancer outcomes. Yet too often, people with SMI face additional challenges in accessing screening, diagnosis, and treatment pathways. These barriers can delay care, reduce treatment effectiveness, and ultimately cost lives.

That’s why the South East London Cancer Alliance has partnered with the Woolwich Service Users Project (WSUP) to hear directly from service users about their experiences. The aim is simple but powerful: understand what stands in the way and build solutions that ensure fair and timely cancer care for everyone.

How you can get involved

If you:

Are over 18,
Have a diagnosed serious mental illness,
Have a history of smoking,
Live in South East London (Bexley, Bromley, Croydon, Greenwich, Lambeth, Lewisham, or Southwark),

then your voice could make a real difference.

You may have been referred for lung cancer screening, diagnosed with lung cancer, or spoken to your GP about persistent symptoms like a cough or shortness of breath. Whatever your experience, sharing it can help shape future services.

What to expect

Focus groups (online or in-person in Woolwich) lasting about 90 minutes.
A safe, supportive space to share your experiences with up to five other participants.
Reimbursement for your time (£20–£30 depending on the session) plus refreshments at in-person events.
Confidentiality and anonymity are guaranteed.

When and where

Focus groups will run September – October 2025.

Online via Microsoft Teams.
In person at Woolwich Service Users Project, 107 Brookhill Road, SE18 6BJ.

Take part

👉 To sign up or learn more, visit wsupwoolwich.org/mind-and-body-study
📧 Email: getinvolved@wsupwoolwich.org
📞 Call: 020 8316 6558

Deadline to register: 10th October 2025 (but get in touch even if you miss it—support is flexible).

Together we can change the story

Every voice matters. By sharing your experiences, you can help break down barriers to early lung cancer diagnosis and ensure better care for people with serious mental illness.

Because when it comes to cancer care, no one should be left behind.

Would you like me to make this blog more community-facing (warm, story-driven, with lived-experience language) or more professional-facing (for healthcare partners and stakeholders)?

Healing Through Words: Poetry Workshop at West Ealing Library – 18th September

By Matthew McKenzie – Carer poet and Carer activist

On the 18th of September, West Ealing Library once again became a hub of creativity, reflection, and connection as carers gathered for our second poetry workshop. Guided by carer activist and writer Matthew McKenzie, the session offered not just writing prompts, but a safe and supportive space to explore the healing power of words.

Poetry as Expression and Healing

The morning began with Matthew sharing his personal journey from caring for his mother living with schizophrenia, to writing books on mental health and carer experiences, and now using poetry as a tool for both advocacy and self-expression.

For many carers, life can feel isolating, exhausting, and invisible to wider society. Poetry offered participants a way to give voice to those emotions. As I reminded carers, “Poetry gives shape to what’s hard to say” — even if it’s just a few lines scribbled on paper, those words can carry truth, comfort, and even influence change.

Continue reading →

Celebrating Unpaid Carers – A Night of Recognition

By Matthew McKenzie – Carer champion

On Friday 12th September 2025, I had the privilege of attending Abilities Development’s Awards Night: Celebrating Unpaid Carers at The Grange in London. The event was a moving and powerful reminder of the sacrifices, love, and resilience shown by unpaid carers across our communities.

The event was hosted by founder Dr Karen May, who spoke passionately about the vision to celebrate and support unpaid carers. The evening also included tributes from fellow carers sharing their lived experiences, moving reflections on the sacrifices and strength carers show daily, and recognition from community leaders.

As many of you know, unpaid carers often go unseen, their daily contributions hidden behind closed doors. Yet they carry the heavy responsibilities of looking after loved ones with compassion and strength, often without formal recognition. This event was different, it put carers at the centre, reminding us all that their efforts matter and deserve to be celebrated.

We were given a tour of the facilities available for unpaid carers and their loved ones to us.

One of the highlights of the evening was the presentation of awards and certificates to unpaid carers. Each recipient was honoured with a Certificate of Honour in Caregiving, recognising their unconditional love, tireless dedication, and the invaluable role they play in supporting their loved ones without financial reward or formal recognition.

The evening, attended by the Mayor of Brent and other distinguished guests, was filled with speeches that spoke to the heart of caregiving, its challenges, its emotional toll, but also its incredible strength. One message that stood out was that carers must not forget their own worth and wellbeing. As was beautifully said on the night: “You are important. Take moments for yourself so you can rejuvenate, be well, and stay healthy.”

I was truly honoured to receive a Certificate of Honour in Caregiving myself. This certificate recognised the unconditional love and tireless dedication of carers who, without pay or recognition, give their heart, time, and energy to provide comfort, dignity, and hope. Holding it in my hands was not just a personal moment of pride, but also a reminder of the countless carers whose work too often goes unnoticed

Events like these are not “just another event.” They are opportunities to create legacies and spaces where carers are not only seen but also valued, uplifted, and supported. They are about passing on the message to future generations that caring is not a burden, but a profound act of humanity.

As someone who has long campaigned for carers’ voices, I want to encourage others to support, promote, and attend events like this. Whether it’s through organisations like Abilities Development, local carer networks, or even small community groups, recognising unpaid carers is vital.

To every unpaid carer reading this: you are a quiet hero. Every sleepless night, every whispered prayer, every act of kindness you show it matters. You matter.

Carers can book to use The Grange by contacting Abilities Development directly. Whether it’s for a quiet space to reflect, joining a carers’ group, or making use of tailored support services, The Grange offers a safe environment built around compassion and community.

Email: admin@abilitiesdevelopment.com

Power, Pride, Progress: A Celebration of Black History Month 2025

By Matthew McKenzie – Facilitator of national ethnic carer forum

Black History Month 2025 is not far behind, this blog celebrates the spirit of “Standing Firm in Power and Pride.” The video. hosted by Matthew McKenzie, founder of the National Ethnic Mental Health Carer Forum invites viewers on a reflective and inspiring journey through history, identity, and purpose.

Unpacking the Theme: Power and Pride

“Power” in Black History Month isn’t about titles, it’s about leadership that uplifts communities, resistance that shapes policy, and vision that transcends obstacles. From political trailblazers to artists and educators, Black leaders have transformed the narrative of equity.

“Pride” stands for cultural identity, heritage, and the vibrant legacy of Black excellence across generations. It pulses through art, storytelling, music, and traditions that echo forward. This month invites us to embrace that heritage without reservation or apology.

Call to Action: Watch, Reflect, and Share

We invite you to watch the video, reflect on its message, and share it widely. Encourage your community. friends, family, colleagues to stand firm in their own power and pride. Let’s amplify these voices and build bridges toward an inclusive future.

Commemorating Groundbreaking Milestones

This year holds special significance:

The 60th Anniversary of the Race Relations Act — a pivotal moment in Britain’s legislative effort to combat racial inequality.

Remembering Malcolm X — whose courage and conviction continue to inspire global movements for justice.

The 80th Anniversary of the Fifth Pan-African Congress — where visionaries like W. E. B. Du Bois, Kwame Nkrumah, and Amy Ashwood Garvey united to confront colonial oppression.

Honouring Paul Stephenson OBE — leader of the 1963 Bristol Bus Boycott.

Honouring Lord Herman Ouseley — instrumental in advancing Britain’s approach to institutional equality.

Their legacies reinforce that our present progress is rooted in collective courage and unwavering solidarity.

Why This Matters for Mental Health and Carers

At the core of the National Ethnic Mental Health Carer Forum’s mission is the recognition that cultural heritage and identity are integral to wellness and caregiving. It’s a call to action. It urges us to:

Break down barriers that impact mental health support.

Cultivate environments where cultural pride is part of healing.

Celebrate carers, families, and communities who carry resilience forward every day.

I hope the month brings us together, brings communities together to celebrate black history. Thanks for reading.

Make a Difference: Become a Cancer Outpatient Support Volunteer at St George’s Hospital

Added by Matthew McKenzie (Facilitator of National Cancer Carer Forum)

St George’s Hospital is looking for compassionate and friendly volunteers to support patients in the Ruth Myles Day Unit and Trevor Howell Day Unit.

The cancer day units are always busy, and a warm smile or a listening ear can make a world of difference for patients and their families. As a Cancer Outpatient Support Volunteer, you’ll play an important role in creating a welcoming, supportive environment during what can be a difficult time.

What will you do as a volunteer?

Welcome and reassure patients and their families when they arrive.
Offer refreshments and help with lunches.
Accompany patients to other departments if needed.
Keep waiting areas tidy and well stocked with patient information leaflets.
Share information about local support services and the Macmillan Information and Support Centre.
Provide comfort, conversation, and a listening ear to those waiting for or undergoing treatment.

What St Georges are looking for

Volunteers aged 18+ with a positive, helpful attitude.
Good listening and communication skills, with sensitivity towards patients.
An interest in supporting people affected by cancer.
A regular commitment of three hours once a week (morning or afternoon), for at least six months.

Full training and ongoing support are provided, and you’ll be part of a caring team that values your contribution.

Why volunteer with St Georges Cancer Units?

Make a real difference in the lives of people affected by cancer.
Meet new people and be part of a supportive team.
Learn new skills and gain valuable experience in a healthcare setting.

Macmillan Cancer Information & Support Centre (for cancer-related volunteer roles)

Phone: 020 8725 2677
Email: cancer.information@stgeorges.nhs.uk
Location: St George’s Hospital, Blackshaw Road, London SW17 0QT

If you’d like to give your time, compassion, and energy to support people during their cancer journey, consider becoming a Cancer Outpatient Support Volunteer.

Ethnic mental health Carer Forum Update August 2025

by Matthew McKenzie – National Ethnic Mental Health Carer Forum Chair

In August, the online National Ethnic Mental Health Carer Forum came together once again to confront difficult but necessary conversations about systemic racism, discrimination, and the experiences of ethnic minority carers within health and social care. The forum, hosted by Matthew McKenzie, provided a platform for carers, professionals, and researchers to share insights, frustrations, and plans for change.

Focus on Racism and Discrimination

This month’s forum was unflinching in its focus: racism in health and mental health systems. Attendees shared powerful testimonies of racial abuse and discrimination, highlighting how these experiences undermine trust in services and affect both carers and those they support. There was a clear call for honesty – participants stressed the importance of naming racism directly, rather than disguising it behind euphemisms.

The group also discussed the overrepresentation of Black and brown people in prisons, the lack of tailored initiatives for older Black carers, and the persistent inequalities faced by ethnic minority families trying to navigate mental health and social care support.

Research and Evidence from Carers Trust

A key presentation came from Andrew of Carers Trust, who shared research into the barriers faced by Black, Asian, and minoritised ethnic carers. The findings highlighted widespread issues: discrimination, language barriers, lack of cultural competence, and difficulties in accessing benefits. Andrew emphasised the need for culturally inclusive services and stronger outreach strategies, while acknowledging feedback from the forum that research and advocacy must be explicit about racism rather than avoiding the term.

Andrew expanded on the importance of equity in benefit advice, pointing out that many carers miss out on their entitlements because information is inaccessible, overly complex, or not communicated in culturally relevant ways. He called for dedicated advice services that are not only multilingual but also sensitive to carers who may not self-identify as such.

He also spoke about the impact of social isolation on carers from ethnic minority backgrounds, who often have fewer support networks and face stigma within their own communities. Addressing this requires building trust with local organisations and ensuring carer support is visible in spaces where communities already gather, such as faith centres or community hubs.

Finally, Andrew outlined the Carers Trust’s national strategy, which involves working more closely with local carer organisations, producing research that amplifies marginalised voices, and lobbying for systemic reforms. He highlighted how this forum’s feedback directly shapes their advocacy, showing a real commitment to partnership.

Questions raised during Carers Trust’s presentation:

How can Carers Trust ensure its research explicitly names racism rather than using softer language?
What specific support can be offered to carers who do not self-identify as carers and miss out on benefits?
How can Carers Trust improve its complaints handling processes, particularly for carers facing racism and discrimination?
What role can MPs and lobbying groups play in supporting Carers Trust’s advocacy for ethnic minority carers?
How will Carers Trust ensure its multilingual materials are distributed widely enough to reach isolated communities?

Hampshire & Isle of Wight NHS Anti-Racism Initiatives

Usually NHS Mental Health trust representatives update on anti-racism initiatives at the forum. This time Hampshire and Isle of Wight engaged with minority carers.

Elton who is the Diversity and Inclusion Partner from Hampshire and Isle of Wight NHS Trust provided an update on their anti-racist programmes, including the rollout of the Patient and Carer Race Equality Framework (PCREF). The trust has begun implementing cultural competence training, engaging with local communities, and embedding anti-racism into its wider mental health services. While early in its journey, the trust is already seeing changes in communication and engagement across different wards and services.

Elton shared that the trust is actively developing training modules on implicit bias, with the aim of reaching every staff member across its services. This training is intended not as a one-off exercise but as part of a sustained culture change programme. Early feedback from staff has been encouraging, with more frontline workers recognising how unconscious bias can influence treatment decisions.

He also described the trust’s efforts to engage directly with service users and carers, ensuring that their lived experiences feed into decision-making. Listening events, surveys, and advisory panels are being used to capture diverse perspectives, with a particular focus on groups who historically felt excluded from consultation.

In addition, Elton emphasised the need for transparency and accountability. The trust will publish regular updates on its PCREF action plan, allowing communities and stakeholders to scrutinise progress. He acknowledged that this is just the beginning, but stressed that embedding anti-racism into healthcare systems requires openness, humility, and sustained commitment.

Participants raised questions about how these initiatives address specific groups, such as older Black carers and prisoners’ families, as well as concerns about public misconceptions of anti-racism work. Elton acknowledged these challenges and committed to following up with colleagues on gaps raised during the discussion.

Questions raised during NHS Trust’s presentation:

How will PCREF specifically address the needs of older Black adults who often feel invisible in services?
What is being done to support the mental health of prisoners (e.g. Albany and Parkhurst prisons) and their families within this anti-racist framework?
How will the trust prevent the public misconception that PCREF “excludes” white people?
What mechanisms are in place to ensure transparency and accountability in publishing progress updates?
How will the trust measure the long-term impact of cultural competence and implicit bias training?

Academic Research Contributions

The forum also heard from Shylet, a PhD researcher from University of Glasgow, who is focusing on learning disabilities. She presented her work on the lived experiences of Black African families caring for adults with learning disabilities, and invited participants to take part in interviews. Their contributions highlighted the importance of academic research in documenting and amplifying carers’ lived realities.

For more details you can contact her at S.Musabayana.1@research.gla.ac.uk

Carers’ Experiences of Benefits and Support

Another important theme was the financial challenges facing carers. The group discussed the complexity of benefits like Carer’s Allowance and how misinformation or fear of losing other entitlements often deters carers from claiming support. A carer expressed reluctance to claim due to concerns about how it might affect their relative’s benefits, while another highlighted the importance of valuing one’s own contribution and recognising caring work. There was frustration with bureaucratic systems that seem designed to exclude, particularly when layered with the additional barriers of language, culture, and discrimination.

Carers also highlighted the immense value of unpaid care, with estimates placing its worth at over £180 billion per year if it were to be paid for by the NHS. This figure underscored the urgent need for better recognition and support of carers’ contributions.

Strengthening Complaints and Accountability

There was a debate around how carers can raise complaints when faced with racism or poor treatment. Many participants expressed a lack of trust in formal systems like the CQC or Ombudsman, feeling that complaints disappear into bureaucracy without change. Suggestions included working with MPs, lobbying groups, or the media to ensure voices are heard.

Final Reflections

The August forum showed once again how necessary it is to hold these difficult conversations. Carers spoke bravely about racism and exclusion, professionals shared updates on anti-racist strategies, and researchers sought to bring lived experience into policy. Yet the message was clear: systemic change requires more than frameworks and research reports. It requires honesty, collaboration, and persistence.

As host, I was encouraged by the passion and determination in the room. The forum continues to grow as a national voice for ethnic minority carers, and our commitment to addressing racism head-on remains at the heart of this work.

Lewisham, Southwark & Lambeth carer forum update August 2025

The meeting facilitated by Matthew McKenzie began with introductions from participants and updates on various carer support initiatives, including forum mergers and NHS plan changes.

Local council strategies and initiatives were discussed across different boroughs, with particular focus on Lambeth and Southwark’s carer support plans and the development of a carer’s forum in Lewisham. The group explored challenges faced by carers, including access to primary care and the need for better coordination, while discussing recent conferences and upcoming events aimed at supporting and advocating for carers’ rights.

Lewisham Carers Strategy and Service Updates

Lewisham is currently refreshing its Carers Strategy to strengthen support for unpaid carers and improve access to local services. The focus is on ensuring carers are included in decision-making through co-production and collaboration with the council, health providers, and community organisations. A major priority is improving well-being services, providing better information, and ensuring carers know their rights under the Carers Leave Act.

As part of wider NHS reforms, Lewisham is moving towards a neighbourhood-based care model designed to bring services closer to local communities. While this aims to make access more seamless, carers raised concerns about inconsistent GP access, gaps in communication, and challenges navigating between boroughs when supporting loved ones. The forum highlighted the importance of better coordination between primary care, hospital discharge planning, and mental health services to ensure carers are recognised and supported.

Lambeth Carers Strategy Refresh

Lambeth is currently refreshing its Carers Strategy with the aim of improving services, increasing visibility, and ensuring carers have a stronger voice in decision-making. The updated strategy focuses on key priorities such as well-being, access to assessments, respite options, and workforce training for those supporting unpaid carers.

There was a particular focus on improving support for mental health carers in Lambeth. The Carers Hub Lambeth team continues to facilitate peer support groups and collaborates closely with the South London and Maudsley NHS Foundation Trust to ensure carers are recognised as partners in care planning. Initiatives like Triangle of Care are gaining momentum, emphasising better communication between professionals and families while creating pathways for carers to get involved in shaping local mental health services.

Carers Hub Lambeth also celebrated the growing range of community-based activities available for carers and families in Lambeth. Over the summer, there have been several events designed to support young carers, including trips, tours, and group workshops aimed at helping them connect with others and access emotional support. These initiatives are part of Lambeth’s broader goal to make sure younger carers, who are often overlooked, receive the help they need both at home and within education.

One of the key upcoming events for Lambeth carers is the Lambeth Carers Strategy Event taking place on 25th September 2025 at 336 Brixton Road. The session will bring together carers, professionals, and decision-makers to review plans, share ideas, and set priorities for the future. Carers are strongly encouraged to attend to ensure their voices are heard and to take part in shaping the borough’s action plans moving forward.

Southwark Council Carers Support and Strategy Group

Matthew fed back on how Southwark Council continues to strengthen its approach to supporting unpaid carers, with a growing emphasis on improving access to information, assessments, and respite services.

The Unpaid Carers Strategy Refresh is a project running from August 2025 to April 2026, led by Southwark Council in collaboration with Adult Social Care, the NHS, local voluntary groups, and unpaid carers themselves. The plan focuses on improving support for carers by updating evidence on local needs, strengthening engagement with seldom-heard groups, and mapping gaps in current services.

Key priorities include better access to respite care, enhanced referral pathways, stronger partnerships with health services, and improved inclusion of young carers, carers with disabilities, and LGBTQ+ carers. The initial phase, from August to October, involves reviewing existing strategies, mapping current services, gathering insights through focus groups and surveys, and benchmarking against national policies and neighbouring boroughs.

The forum highlighted the importance of co-production, ensuring that carers are actively involved in shaping local strategies and service priorities.

Update on Key Themes from the final NHS England Carers Conference

Matthew highlighted that the 2025 NHS England carers conference placed a strong emphasis on recognising unpaid carers as essential partners in delivering effective healthcare. The NHS stressed its commitment to involving carers in shaping services and policies, ensuring their voices are reflected at every stage of decision-making. There was a clear acknowledgement that without unpaid carers, many health and social care systems would face significant pressure.

You can watch the conference below.

A major focus was on the NHS’s shift towards neighbourhood-based care models designed to bring services closer to communities. Matthew explained that this change aims to improve coordination between GPs, hospitals, and mental health services, but he also highlighted concerns raised about fragmented communication and the risk of carers being left out of local planning. Carers at the conference called for better access to information and more joined-up pathways across boroughs.

The conference also featured interactive workshops and discussion groups focused on co-production, digital innovations, and addressing inequalities among carers. Specific sessions explored improving support for young carers, carers from minority backgrounds, and those supporting loved ones with mental health needs. The event closed with a call to action for stronger collaboration between carers, NHS teams, local authorities, and community organisations. Attendees were encouraged to get involved in upcoming forums and engagement opportunities to help shape future services and ensure carers’ voices are at the heart of decision-making.

Matthew shared updates on national policy developments discussed at the conference, including the Carers Leave Act and commitments to expanding access to respite, assessments, and flexible working rights. There was also a discussion about new digital tools and support platforms designed to make it easier for carers to connect with professionals and access resources. However, many attendees expressed concerns that these initiatives need proper funding and training to work effectively in practice.