Tag Archives: carer advocacy

Becoming a Human Book at the DUALITY Event – The Carer They Didn’t See

By Matthew McKenzie – Carer Activist and Carer Advocate

On 8 September 2026, I had the honour of attending the DUALITY event at King’s College London, held at Bush House.

The event was a research and public/community engagement event connected to the INTERCEPTION study, based in King’s Department of Global Health & Social Medicine, within the School of Global Affairs / Faculty of Social Science & Public Policy.

There was a packed agenda, which I have shown below.

  • Registration, refreshments and photo exhibition — Attendees arrived, had refreshments and had an opportunity to look around the community photography exhibition.
  • Welcome and introduction to DUALITY — The organisers introduced the event and its focus on ageing, ethnicity, health and experiences of living with multiple long-term conditions.
  • Research Panel: Ethnicity, Ageing and Health — Researchers discussed work exploring inequalities and experiences at the intersection of ethnicity, ageing, health and multiple long-term conditions.
  • King’s Sport & Wellness energiser — Attendees were invited to take part in accessible seated stretches and movement exercises.
  • Human Library — Attendees could “borrow” Living Books for short conversations, hearing personal stories intended to build understanding, foster empathy and challenge assumptions. My Living Book was “The Carer They Didn’t See.”
  • Community information booths — Organisations and community representatives provided information and resources. This was also where I supported the Carers UK stall.
  • DUALITY Photography Exhibition — Photographs used visual storytelling to explore support, health, ageing and lived experience. My photograph “The Carer They Didn’t See” was included in the exhibition.
  • Photography Competition Awards — Winners of the DUALITY Photography Competition were announced, with “The Carer They Didn’t See” selected as one of the winning entries.
  • Creative performance — The programme included a creative lived-experience performance exploring identity, Caribbean heritage, racism, family, memory and culture.
  • Keeping Fit with Multiple Long-Term Conditions — This discussion brought professional and lived-experience perspectives together to explore chronic conditions, exercise, confidence and wellbeing.
  • Dinner and networking — The evening concluded with food and an opportunity for attendees, researchers, community groups and people with lived experience to connect.

This was quite a different event for me. I have attended many conferences, workshops and involvement events over the years as an unpaid carer, carer advocate and speaker. This time, however, I wasn’t simply attending or presenting.

I became a book.

More specifically, I became a Living Book as part of the event’s Human Library.

My title was:

The Carer They Didn’t See

And by the end of the evening, that title would take on another meaning I hadn’t expected.

What was the DUALITY event?

DUALITY brought together research, lived experience, creativity, photography, health and conversations about ageing and multiple long-term conditions.

What I particularly appreciated was the emphasis on people’s experiences rather than simply presenting research about people.

Throughout the event there were presentations, discussions, creative displays and opportunities for people to connect with one another.

I also ran the Carers UK Stall along with other things I use to raise unpaid carer awareness

Photography was also an important part of the project. Participants from different parts of the world had taken part in workshops exploring photography as a way of capturing support, people’s inner and outer worlds, ageing and multiple long-term conditions.

But one of the most interesting parts for me was the Human Library.

When people become books

The Human Library turns the idea of a conventional library on its head.

Instead of borrowing a book from a shelf, you borrow a person.

The organisers explained that the Human Library is intended to foster empathy, challenge prejudice and provide a safe space in which people can ask questions of someone they might not ordinarily meet. Visitors browse the available titles and then spend a short period listening to that person’s story and having a conversation with them.

There were several Living Books available, each representing very different experiences.

My book was called The Carer They Didn’t See.

My short description read:

“I was a carer nobody counted, until grief became words, and words became my way to say: we’re here, and we matter.”

That sentence says a great deal about why I continue campaigning around unpaid carers.

For years I supported my mother, who lived with serious mental illness. Like many unpaid carers, much of what I did happened quietly and behind closed doors.

There was no uniform.

There was no job title.

Often there wasn’t even recognition that I was a carer.

Yet the responsibility was very real.

Being “read”

Being a Living Book is quite different from giving a presentation.

When presenting at a conference, I usually have slides, a topic and a limited amount of time in which to make particular points.

The Human Library was much more personal.

Someone chooses your “book” because something about its title interests them. They sit with you, listen and can ask questions.

That creates a different kind of conversation.

It also made me think about how powerful lived experience can be when people are given the space not merely to tell their story, but to have somebody genuinely listen to it.

The organisers themselves acknowledged that hearing stories we would not normally encounter can sometimes be challenging and thanked the Living Books for making the time and space for those conversations.

For unpaid carers, I think that is particularly important.

We spend a great deal of time discussing services, policies, strategies and systems. Those things matter enormously.

But behind every carer statistic is a human story.

The photograph of an unseen carer

There was another part of the event that became especially significant for me.

I had also entered a photograph into the DUALITY community photography competition.

The photograph looks deceptively simple.

It shows my mother’s coat and shawl resting on a chair. My own chair sits partly outside the frame.

That positioning was deliberate.

My mother’s chair occupies the centre because she was the person receiving support. My own chair sits towards the edge because I wanted to represent something that many unpaid carers experience:

We are always there, but we are not always seen.

I also deliberately kept the ordinary home environment visible.

Caring doesn’t only happen in hospitals, clinics and professional environments.

A huge amount of caring happens quietly in people’s homes.

There may be no audience to see the difficult nights, the worry, advocacy, appointments, emotional support or constant vigilance.

But the carer is there.

When photography becomes lived experience

One thing I enjoyed about the photography project was learning that a powerful photograph doesn’t necessarily require expensive equipment or an elaborate setting.

The workshops explored techniques including framing, symbolic composition, symmetry, colour and other approaches to visual storytelling.

For me, however, the emotional meaning of the photograph mattered most.

The coat and shawl belonged to my mother.

The empty chair therefore represents much more than furniture.

It connects the photograph directly to my own experience of caring, bereavement and the work I now do to raise awareness of unpaid carers.

During the judging discussion, I was delighted to hear The Carer They Didn’t See specifically mentioned as one of the photographs demonstrating different dimensions of support.

I wasn’t expecting what happened next.

Winning the DUALITY Photography Competition

When the winners were announced, my name was called.

The Carer They Didn’t See had been selected as one of the winning entries.

I received a medal engraved:

WINNER
Matthew McKenzie
Duality Photo Competition
2026

I was very surprised.

I won a four-week personal training block with a coach at the King’s Sports and Wellness Centre in Waterloo.

For me, though, the most meaningful prize was the recognition of the story behind the photograph.

It meant that an image representing an unpaid carer’s experience had been noticed.

And perhaps there is some irony in that.

I created a photograph called The Carer They Didn’t See.

And people saw it.

Listening to other lived experiences

The evening was certainly not only about my own story.

One of the strengths of DUALITY was hearing from people with very different experiences.

There was discussion about musculoskeletal conditions, multiple long-term conditions, physical activity, persistent pain and the importance of taking a more holistic approach to people’s health.

I was particularly struck by the lived-experience discussion about fibromyalgia.

One speaker described how developing chronic pain changed her life and even affected her sense of identity. She spoke about a long and frustrating journey through healthcare before receiving a diagnosis, and about sometimes feeling that her symptoms were being questioned or invalidated.

She also described how movement and supported exercise helped her reconnect with her body, understand her limits and rebuild confidence.

One comment particularly fitted the wider theme of the evening: we often cannot see what another person is experiencing.

Invisible conditions and invisible caring have something important in common.

Culture, identity and memory

Another powerful part of the evening explored culture, memory and identity.

We heard personal reflections on growing up in London’s East End, experiences of racism, Caribbean heritage, family, music and the ways culture can become a source of strength and protection.

That fitted beautifully with the idea of DUALITY.

From grief into creativity

Since losing my mother, I have increasingly used writing, poetry, blogging and other creative approaches to explore my experiences of unpaid caring.

Creativity allows me to communicate things that sometimes don’t fit neatly into a presentation or policy document.

A photograph can do the same thing.

A chair.

A coat.

A shawl.

An empty space.

For somebody else, these may simply be everyday objects.

For me they contain memories of caring.

And when placed together within a frame, they say something about the millions of unpaid carers whose contribution can remain just outside society’s field of vision.

Recognition as a Living Book

I was also very grateful to receive a Certificate of Appreciation recognising my contribution as a Living Book at the DUALITY Human Library.

That certificate and the photography medal represent two quite different parts of the same day.

One recognises telling a story.

The other recognises showing a story.

Both were ultimately about lived experience.

The carer they finally saw

I left King’s College London thinking again about the title I had chosen:

The Carer They Didn’t See.

For many years, that description could have applied to me.

It could still apply to countless unpaid carers today.

They may be sitting beside someone in hospital.

They may be managing a crisis at home.

They may be trying to navigate mental health services.

They may be a son, daughter, parent, sibling, partner, friend or neighbour.

And sometimes they don’t even recognise themselves as carers.

Events such as DUALITY provide another way of making those experiences visible.

But people’s stories matter too.

I went to King’s College London expecting to share mine as a Human Book.

I didn’t expect to leave wearing a gold medal for a photograph inspired by that same caring journey.

Perhaps that is why the day meant so much to me.

For once, “The Carer They Didn’t See” was seen.

National Ethnic mental health Carer Forum : August Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

The August meeting of the National Ethnic Mental Health Carer Forum brought together unpaid carers, NHS leaders, healthcare professionals, academic researchers, and voluntary sector advocates from across the country. The session provided a vital space to address race equity, systemic racism, lived experience, and ongoing research into minoritised caring experiences.

Matthew McKenzie opened the meeting by welcoming attendees and reinforcing the core purpose of the national forum. He reflected on how the platform has grown into a crucial space where family carers can directly challenge health structures, influence decision-makers, and learn about national policy developments such as the Patient and Carer Race Equality Framework (PCREF). Matthew acknowledged that while discussions around institutional racism and health inequalities can be heavy and emotional, the forum remains a safe, respectful, and healing space dedicated to driving real, actionable change across the NHS.

Minute of Silence: Professor Jason Ardey

The forum opened with a poignant minute’s silence led by Debbie Best in honour of the life, legacy, and memory of Professor Jason Ardey following his passing.

Members paused to reflect on his landmark contributions to racial equality, education, and social justice. His legacy of challenging institutional barriers and amplifying minoritised voices continues to inspire the core work and mission of the forum.

Reflections on Race Equality: Norfolk and Suffolk NHS Foundation Trust (NSFT)

Speakers: Cath Byford (Deputy Chief Executive / Chief Nurse / Director of Patient Experience) & Annie (PCREF Carer Lead)

Cath Byford opened the trust’s update by offering an open and unvarnished reflection on NSFT’s ongoing race equity journey. Acknowledging that the trust has faced significant scrutiny and structural challenges over recent years, Cath emphasized that building genuine trust with minoritised communities requires moving beyond policy statements to deliver measurable, lasting systemic change. She explained that over the past 18 months, NSFT has embarked on a deliberate path to rebuild its patient experience framework, ensuring that health equity, anti-racism, and lived experience are embedded into every layer of clinical governance and strategic planning.

PCREF Carer lead Annie brought a vital lived-experience perspective to the presentation, sharing how the trust is working to bridge the gap between executive decision-making and the everyday realities of unpaid family carers. Together, they outlined the core pillars driving NSFT’s current equity transformation:

  • Dedicated Health Equity Team & Clinical Reform: The trust has invested heavily in establishing a specialist Health Equity team, created to audit clinical pathways and directly confront institutional disparities. The team’s operational focus is centered on dismantling disproportionate clinical interventions, specifically working to significantly reduce the use of physical and chemical restrictive practices, address the over-representation of Black and minority ethnic service users detained under the Mental Health Act, and monitor and reduce the disproportionate application of Community Treatment Orders (CTOs).
  • Diversifying Governance & Locality Councils: Cath shared candidly that an internal review of the trust’s governance structures revealed a stark under-representation of global majority voices across its five locality councils. Recognizing that local health strategies cannot succeed if key decision-making bodies remain ethnically unrepresentative, NSFT has launched targeted community outreach initiatives designed to recruit diverse community members, carers, and experts by experience onto these councils to ensure grassroot priorities shape service delivery.
  • Workforce Transformation & Reciprocal Mentorship: Highlighting broader organizational culture, Cath detailed how workforce race equity has been integrated into the trust’s 12 major transformation programmes. A central highlight of this work is the Transformational Reciprocal Mentorship Programme, coordinated by Ethan Charles, which was recently recognized nationally for healthcare excellence. The initiative pairs senior trust executives and board members with staff members from minoritised backgrounds in a reciprocal learning partnership, helping leadership understand systemic workplace barriers while creating clear pathways for career progression and equity across the trust.

Questions and Discussion

Q1. How is Norfolk and Suffolk NHS Foundation Trust embedding cultural awareness within service evaluation and PCREF implementation?

A question was raised regarding how patient and carer feedback is systematically captured, and whether cultural awareness is meaningfully integrated into trust surveys, service audits, and PCREF rollouts rather than treated as a tick-box exercise.

Response:

Cath Byford acknowledged that standard feedback mechanisms often fail to capture the nuanced experiences of minoritised communities. She explained that the trust is refining its data collection tools alongside its Health Equity team and local carers to ensure feedback loops directly inform clinical practice and PCREF operational plans.

Q2. How are intersectional barriers such as neurodivergence and criminal justice involvement being addressed for minoritised families?

A detailed discussion focused on the severe intersectional challenges faced by minoritised families, particularly where mental health conditions overlap with neurodivergence or involvement in the criminal justice system. Concerns were raised that carers face immense financial and logistical hurdles to attend meetings or advocate for relatives.

Response:

Cath and Annie agreed that intersectionality must be at the forefront of service design. The panel emphasized that research teams and trust steering groups must formally budget for carer access needs—including funding for sitters, respite, and transport—to enable equitable participation from grassroot carers.

Q3. How can NHS trusts move away from generic terminology like “BAME” to build trust with specific communities?

Contributors stressed the importance of discarding outdated, homogenized labels such as “BAME” in favor of recognizing specific ethnic and cultural identities. Members questioned how trusts plan to engage directly with local grassroot organizations rather than relying on top-down communications.

Response:

The presenters affirmed that language matters deeply in establishing trust. NSFT is focusing on direct partnerships with Voluntary, Community, and Social Enterprise (VCSE) sector organizations that already hold trusted relationships within specific cultural communities, ensuring engagement is authentic and localized.

Keynote Address: Competence, Leadership, and Race Equity

Speaker: Lord Victor Adebowale (Chair, NHS Confederation & Founder, NHS Race and Health Observatory)

Lord Victor Adebowale delivered a sweeping keynote address that fundamentally challenged traditional healthcare perspectives on race equity, anti-racism, and organizational accountability. Moving the discussion away from performative pledges and symbolic gestures, Lord Victor framed racial equity not as an optional moral, social, or political stance, but as a core requirement of clinical and operational competence.

He began by reframing the definition of leadership within the healthcare ecosystem, asserting that unpaid family carers act as leaders every single day. Through their daily advocacy, continuous care coordination, and tireless protection of vulnerable family members, carers demonstrate true leadership long before health systems officially acknowledge their presence.

Lord Victor drew stark attention to the persistent impact of the Inverse Care Law, illustrating how individuals from the global majority routinely receive poorer quality services and face worse health outcomes despite presenting with the highest levels of clinical need. He warned that system-wide failure to serve minoritised families cannot be viewed as an isolated issue; when a healthcare trust tolerates substandard, culturally unsafe care for Black and ethnic minority service users, the overall quality, safety, and effectiveness of care inevitably degrades for every patient using that service.

A central theme of his address focused on moving the national conversation away from an endless reliance on individual conscious or unconscious bias training. Lord Victor argued that over-emphasizing implicit bias often allows healthcare systems to evade operational accountability. Instead, anti-racism must be treated as a strict benchmark of professional capability. Leaders and clinicians who fail to deliver equitable care across diverse populations are not simply displaying personal bias they are actively choosing to operate incompetently. He insisted that health trust boards must begin holding executive leadership to the exact same rigorous accountability standards for race equity as they do for clinical safety and financial management.

Furthermore, Lord Victor emphasized that unpaid family carers represent the primary early-warning system within the entire healthcare structure. Carers are routinely the first to spot subtle signs of deterioration or service failure, often weeks before clinical teams become aware of an emerging crisis. He condemned the institutional practice of dismissing carer insights under the blanket rationale of “patient confidentiality,” warning that using information governance as an excuse to shut out family members discards the most valuable clinical intelligence available and actively compromises patient safety.

Four Rules for Authentic Community Engagement

To guide health trusts and Integrated Care Boards (ICBs) toward genuine structural reform, Lord Victor outlined four non-negotiable rules of engagement when working alongside minoritised communities and family carers:

  1. Listen with Evidence of Being Heard: Listening exercises and consultation events are entirely meaningless unless community members and carers are provided with clear, practical evidence showing exactly how their feedback altered decisions, policies, or service delivery.
  2. Transfer Real Power: Authentic engagement requires a fundamental shift in traditional power dynamics. Healthcare institutions must share authority and transfer tangible resources so that minoritised communities are empowered to act independently and lead changes themselves.
  3. Equal Partnership over Superficial Co-production: Health systems must move beyond tokenistic co-production exercises, which often amount to seeking quick feedback on pre-written plans—and commit to long-term, equal governance partnerships where carers sit at the decision-making table from inception to evaluation.
  4. Describable and Transparent Outcomes: Any service alteration or policy development resulting from community engagement must produce clear, tangible outcomes that are easily understood, described, and validated by the community itself, rather than hidden behind dense NHS jargon.

Matthew’s Question

Matthew raised concerns regarding the persistent barriers unpaid carers face—specifically questioning how health systems can stop excluding ethnic minority carers through medical jargon and information gatekeeping (such as using “confidentiality” as an excuse to exclude families), and how trusts can be held genuinely accountable under frameworks like the Patient and Carer Race Equality Framework (PCREF).

Lord Victor Adebowale’s Response

Lord Victor addressed this by framing race equity and carer involvement as a matter of operational and clinical competence rather than optional policy:

  • Reframing Carer Insights: He emphasized that family carers are the primary early-warning system in healthcare who spot signs of deterioration weeks before clinical teams. Dismissing carer insights using “confidentiality” throws away vital clinical data and actively compromises patient safety.
  • Competence over Bias: He stated that leaders who fail to provide equitable care to minoritised families or exclude carers are choosing to operate incompetently. Boards must hold executive leadership accountable for race equity to the exact same standards as clinical safety and financial management.
  • Rules of Engagement: He outlined that genuine engagement requires health trusts to listen with evidence of being heard, transfer real power to communities, build equal partnerships, and deliver transparent, describable outcomes that the community can easily see and verify.

Questions and Discussion

Q1. Why are Black men in mental health services disproportionately subjected to high doses of medication rather than holistic therapies?

A critical question was raised regarding why Black men entering acute mental health pathways are frequently managed through high-dose psychiatric medications and prolonged admissions rather than being offered timely talking therapies, early intervention, and holistic community support.

Response:

Lord Victor emphasized that over-reliance on medication and restrictive practices reflects systemic clinical failure and risk-averse institutional cultures. He stressed that true clinical competence requires services to offer culturally appropriate psychological interventions and preventative care early in the care pathway, rather than defaulting to chemical containment during crises.

Q2. How can healthcare systems better support the emotional, financial, and legal well-being of long-term family carers?

A forum contributor shared their personal experience as a sole carer managing a mother with vascular dementia and Alzheimer’s in rural Gloucestershire. They highlighted the severe isolation, legal hurdles, and financial exhaustion experienced by carers, asking directly: “Who is caring for the carer?”

Response:

Lord Victor and forum members acknowledged the systemic neglect of carer well-being. The discussion highlighted that supporting carers is a clinical necessity, not an optional luxury. Practical signposting was shared, pointing members toward specialist support networks and helplines, including Dementia UK, while calling on Integrated Care Boards (ICBs) to fund dedicated carer respite initiatives.

Research Updates: Amplifying Carer Voices

1. Black Carers and Learning Disability Services

Presenter: Lorraine Heath (Trainee Clinical Psychologist, University of Southampton)

Lorraine Heath introduced her doctoral research project exploring the complex, intersectional barriers that Black family carers encounter when navigating mental health and learning disability services on behalf of their relatives. Lorraine explained that while national policy increasingly highlights health equity, Black families caring for loved ones with learning disabilities continue to face profound structural, institutional, and cultural hurdles. These challenges frequently result in delayed access to vital support, misdiagnosis, or total exclusion from essential statutory services.

The research focuses on capturing the lived realities of Black carers across both child and adult services including Child and Adolescent Mental Health Services (CAMHS) and adult community mental health teams to understand how healthcare systems can better support families before crisis points occur. Lorraine emphasized that unpaid Black carers often have to act as fierce advocates, interpreters of complex care systems, and primary safety nets, often without receiving adequate recognition or formal support from service providers.

  • Research Objectives: The study aims to map out the specific diagnostic pathways, institutional barriers, and negative experiences that Black families face when seeking care. By identifying where services fail to provide culturally sensitive, timely support, the project seeks to build a robust evidence base to influence future clinical practice, service design, and commissioning standards across NHS mental health and learning disability teams.
  • Methodology & Care for Participants: Recognizing that discussing institutional barriers and negative service interactions can be emotionally draining, the study utilizes 90-minute flexible online interviews via Microsoft Teams, designed around the participant’s schedule and comfort. To ensure lived experience is meaningfully valued rather than exploited, all participants receive a £25 shopping voucher as a token of appreciation for their time and contribution. Furthermore, strict data protection protocols are embedded throughout the study to guarantee complete anonymity for all participating carers.

Lorraine invited members of the forum to share details of the study within their local networks, encouraging Black family carers with relevant lived experience to participate and ensure their voices shape future mental health provision.

Questions and Discussion

Q1. How will the study protect Black carers from re-traumatisation when discussing negative service experiences?

Forum members inquired about the safeguarding protocols in place for participants who may experience distress while recalling challenging interactions with health and social care services.

Response:

Lorraine confirmed that emotional safety is central to the study design. Pre-interview briefings, built-in debriefing sessions, and immediate signposting to culturally sensitive psychological support are provided to all participants.

2. Supporting the Supporters: Integrating Informal Carers

Presenter: Carol Garbutt (King’s College London)

Carol Garbutt introduced her master’s research project, Supporting the Supporters, which addresses the critical breakdown in communication and partnership between professional healthcare services and informal family carers. Carol explained that despite longstanding national directives highlighting the importance of involving family members, unpaid carers from minoritised backgrounds are routinely sidelined, excluded from decision-making, or left without basic support when supporting a relative through the mental health system.

The study explores the organizational culture, professional attitudes, and systemic practices that dictate how informal carers are treated across clinical settings. Carol highlighted that while professional staff often view safety and treatment solely through the lens of individual patient care, unpaid carers are the ones managing day-to-day crises, monitoring medication side effects, and providing essential emotional and practical stabilization at home. Failing to integrate these informal support networks into formal care planning not only places an overwhelming burden on family members, but actively compromises patient safety and recovery.

  • Research Scope & Focus: The study focuses on gathering perspectives from across the mental health ecosystem including professional healthcare workers, clinical staff, patient advocates, and voluntary sector leaders. By examining how professionals define, view, and interact with family carers, the research aims to pinpoint the precise organizational obstacles and misalignments that lead to carer exclusion.
  • Project Goals & Impact: The overarching objective is to build a robust, practice-informed evidence base that pushes mental health trusts to embed family carers into standard clinical workflows. Carol emphasized that true integration requires moving beyond informal signposting toward establishing clear communication protocols, ensuring carers are formally identified at the point of admission, and treating them as equal, valued partners in care planning and discharge processes.

Questions and Discussion

Q1. How does the research address instances where professionals hide behind confidentiality rules to exclude carers?

Members highlighted that staff frequently cite information governance to withhold basic care updates from family members.

Response:

Carol explained that her study specifically examines professional attitudes and organizational policies surrounding communication. The goal is to highlight best-practice frameworks that allow clinicians to share essential care planning details with families while respecting patient rights.

3. Partners’ Experiences of Gynaecological Cancer

Presenter: Lara (Trainee Clinical Psychologist, University of Hertfordshire)

Lara introduced her doctoral research exploring the lived experiences of partners supporting individuals diagnosed with gynaecological cancer.

  • Research Focus: Examining the complex emotional, physical, relational, and financial impacts on partners navigating a gynaecological cancer diagnosis.
  • Project Goal: Tackling cultural taboos and stigma surrounding gynaecological health, providing evidence to help cancer charities and NHS trusts design tailored psychological and practical support packages for partners.

Questions and Discussion

Q1. How does the study account for cultural stigmas surrounding gynaecological health within minoritised communities?

Carers noted that discussion of gynaecological health remains heavily stigmatized in many ethnic communities, which can prevent partners from seeking external help.

Response:

Lara acknowledged these cultural complexities, explaining that the interview frameworks are designed to be sensitive to diverse cultural norms, allowing participants to share their experiences in a safe, non-judgmental environment.

Creative Advocacy: Combatting Gatekeeping Through Poetry

Matthew McKenzie presented a video poem developed as part of his ongoing advocacy work surrounding the Patient and Carer Race Equality Framework (PCREF).

Using creative media and spoken word, the poem visually and emotionally illustrates the everyday barriers faced by ethnic minority carers including institutional gatekeeping, dense medical jargon, exclusion from multi-disciplinary team meetings, and the sensation of being rendered invisible by healthcare professionals.

Matthew emphasized that creative media and arts-based advocacy are powerful mechanisms for staff training. By translating complex policy frameworks like PCREF into lived emotional narratives, creative media helps NHS staff understand the human impact of structural exclusion and drives empathetic, anti-racist practice across clinical teams.

Key Takeaways and Next Steps

The August meeting highlighted several critical action points for the forum and its partner organizations:

  • Accountability over Intent: Moving beyond policies, anti-racism charters, and pledges to demand measurable, transparent outcomes in patient care and carer satisfaction.
  • Dismantling Institutional Gatekeeping: Working with NHS trusts to ensure family carers are identified and involved early in treatment pathways, dismantling the misuse of confidentiality as a barrier.
  • Embedding Co-Production: Supporting minoritised carers to join trust boards, steering groups, and PCREF advisory panels to ensure lived experience directly shapes local health delivery.

Looking Ahead to September:

The next national forum meeting will feature updates from Sheffield Health and Social Care NHS Foundation Trust, the Race Equality Foundation, Black Country Healthcare NHS Foundation Trust, and regional carer networks.

South London Mental Health carer forum update June 2026

By Matthew McKenzie – Chair of the group

If you weren’t able to join our June South London Mental Health Carers Group meeting, here’s a summary of the main discussions and updates. As always, the meeting brought together unpaid carers from across Lambeth, Lewisham, Southwark and Croydon to share experiences, raise concerns and keep each other informed about developments affecting mental health carers.

Why these meetings matter

One of the strongest themes throughout the meeting was the importance of carers staying connected. Many carers cannot attend every committee or involvement meeting due to their caring responsibilities, work or other commitments. By sharing updates, we can help ensure everyone remains informed about changes that may affect them and the people they support.

Several carers commented that services sometimes feel like they are “reinventing the wheel”, with the same issues being raised repeatedly. While progress can be slow, continuing to speak up and share experiences remains essential.

Updates from the Maudsley Family and Carers Committee

Carers who attended the latest South London and Maudsley (SLAM) Family and Carers Committee shared several important developments.

Review of the Involvement Register

SLAM is reviewing its Involvement Register over the coming months. Working groups will look at areas including:

  • Outcomes
  • How involvement is delivered
  • Governance and policy

Carers interested in influencing how services engage with families are encouraged to consider joining the register. Participation is flexible, allowing carers to contribute when they are able.

Triangle of Care

The Triangle of Care continues to be a significant focus, particularly around how carers are identified, involved and supported during someone’s mental health care.

Discussions also covered how Trusts monitor their progress and how carers’ details are recorded to ensure families receive appropriate information and support.

Information for carers

Work is continuing to improve the information provided to carers. Rather than relying on a single handbook that can quickly become outdated, there are plans to develop more flexible information resources that can be updated more easily and provided when carers actually need them.

Mental Health Act reforms

A significant part of the meeting focused on the recent changes to the Mental Health Act and what they could mean for unpaid carers.

Key topics included:

  • Greater emphasis on patient choice and involvement.
  • The introduction of the Nominated Person, replacing the traditional “Nearest Relative” in many situations.
  • The importance of Advance Choice Documents, allowing people to record their wishes while they are well.
  • The need for carers to understand their legal rights and ask questions during admissions, treatment planning and discharge.

Carers discussed both the opportunities and concerns arising from these changes, particularly where someone may lose insight during periods of illness. There was broad agreement that carers need clear information about how the reforms will be implemented locally and how families will continue to be involved.

Advocacy and complaints

Members shared experiences of trying to access advocacy services and navigate complaints processes.

Concerns included:

  • Limited access to independent mental health advocacy in some boroughs.
  • Unclear complaints pathways.
  • The need for carers to be listened to, even when confidential information cannot be shared with them.
  • The importance of raising concerns through appropriate safeguarding and governance routes where necessary.

Several carers also shared positive experiences where persistence had led to improvements in care.

Local updates from across South London

One of the strengths of the South London Mental Health Carers Group is the opportunity for carers from different boroughs to share what is happening locally. While each area faces its own challenges, many of the issues raised were common across South London.

Lambeth

Carers discussed the continuing work of the Lambeth Living Well Collaborative, which brings together carers, service users, voluntary organisations and professionals to improve local mental health services. Members were reminded that carers are welcome to attend collaborative meetings and contribute to discussions about service improvements.

The conversation also recognised the wider pressures affecting carers beyond mental health services. Rising living costs, reductions in council tax support for many working-age residents receiving benefits, and the increasing financial pressures on families continue to affect carers’ wellbeing. These wider social issues inevitably have an impact on people’s ability to sustain their caring role.

Lewisham

Carers provided an update on Lewisham’s Community Mental Health Transformation programme. While work continues to redesign community services, concerns remain about what happens when someone is discharged from specialist mental health services back to primary care.

Several carers highlighted unanswered questions around:

  • How GPs will be supported to manage people with ongoing severe mental health needs.
  • What support carers can expect once specialist services are no longer involved.
  • Whether communication between secondary mental health services and GP practices is sufficiently robust.

These are important questions that carers hope local services will continue to address as transformation plans progress.

Croydon and Lewisham carer information

Members also heard that new information resources for carers are being developed in Croydon and Lewisham. Rather than relying on lengthy booklets, services are creating a series of practical information sheets covering different aspects of mental health care. This approach should allow information to be updated more regularly and provided when carers need it most.

Carers welcomed this change, noting that people often need specific information at different stages of their caring journey rather than receiving a large handbook all at once.

The important role of GP practices

An interesting discussion focused on the role of GP practices in supporting unpaid carers.

Members recognised that experiences vary considerably between surgeries. Some GP practices have developed strong support for carers, while others still have some way to go.

One positive example shared was Wells Park Practice, where carers have become actively involved in developing support, including helping to establish a regular carers’ coffee morning. This demonstrates what can be achieved when GP practices actively engage with carers and recognise the valuable role they play.

The meeting reinforced several practical messages for carers:

  • Make sure your GP practice knows that you are an unpaid carer and ask to be recorded on their carers register.
  • Ask what support your surgery offers to carers, including health checks, referrals or local support groups.
  • If your current practice offers limited support for carers, it may be worth exploring what neighbouring GP practices provide, particularly if they have developed a stronger carers programme.

As community mental health services increasingly work alongside primary care, ensuring that GP practices recognise and support unpaid carers is becoming more important than ever.

Learning from each other

Perhaps the most valuable part of the local updates was hearing how carers are finding solutions in different boroughs. Good practice in one area can often inspire improvements elsewhere.

Whether discussing carers’ information, community transformation, GP engagement or involvement opportunities, the message was clear: carers’ experiences are a vital source of learning, and sharing those experiences helps improve services across South London as a whole.

Looking ahead

One of the biggest messages from the meeting was that carers have valuable lived experience that services need to hear. Whether through local carers’ centres, involvement registers, Trust committees or community groups, every contribution helps shape future services.

If you are interested in becoming more involved but can only contribute occasionally, don’t let that put you off. Many opportunities allow carers to participate as much or as little as their circumstances allow.

Thank you to everyone who attended and contributed so openly. Your experiences continue to help improve understanding and influence services across South London.

We look forward to welcoming both new and returning carers to our next meeting.

East Sussex Carers Voices – Celebrating Carers Week 2026

East Dean Village Hall – 11 June 2026

Written by Matthew McKenzie, Speaker, Carer, Campaigner and Poet

As part of Carers Week 2026, I had the privilege of travelling to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, carers’ organisations, NHS representatives, local authority leaders, health professionals, community groups and carers from across East Sussex to discuss the realities of caring and identify ways to improve support for unpaid carers.

The event was hosted by Dr Neil Churchill, Chair of Care for the Carers, who guided the day’s discussions and emphasised the vital role carers play in society. Throughout the day, carers shared their personal stories, experiences and recommendations directly with decision-makers and service providers.

This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.

Opening Remarks – Dr Neil Churchill

Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.

He highlighted several key challenges currently facing carers:

• Rising financial pressures and cost-of-living concerns.
• The growing number of carers leaving employment due to caring responsibilities.
• Increased risks of poor physical and mental health among carers.
• Social isolation and loneliness experienced by many carers.
• Growing concerns around carer burnout.

Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.

A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.

Carer Stories and Lived Experience

One of the most powerful aspects of the event was hearing directly from carers themselves.

Miles Bing – Caring Through Dementia

The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.

Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.

He spoke about:

• The long-term impact of dementia on families.
• The challenges of accessing services in rural areas.
• The lack of coordination between health and social care systems.
• The practical and emotional burden placed on carers.

Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.

Young Carers – Julia and Elsie

The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.

Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.

Their stories demonstrated:

• The hidden nature of young caring responsibilities.
• The emotional impact caring can have on children and young people.
• The importance of early intervention and support.
• The value of dedicated young carers services.

Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.

The standing ovation they received reflected the courage and honesty with which they shared their experiences.

Round Table Discussions

Following the morning speakers, attendees participated in facilitated round table discussions.

These conversations focused on:

• The biggest issues facing carers over the next six months.
• Practical actions that could help carers in their caring role.
• Barriers to accessing support.
• Positive examples of support that should be expanded.

Several common themes emerged from these discussions:

Earlier Identification

Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.

Access to Information

Attendees highlighted how difficult it can be to find accurate and timely information about available support.

Financial Pressures

Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.

Mental Health and Wellbeing

Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.

Speaker sessions resumes

Diverse Communities and Caring

A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.

She discussed additional challenges experienced by carers from minority communities, including:

• Language barriers.
• Cultural differences.
• Social isolation.
• Displacement trauma.
• Immigration-related issues.
• Financial and emotional dependency.

Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.

She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.

Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.

My Presentation – A Carer’s Journey

I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.

One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.

However, over time I found myself:

• Coordinating care.
• Supporting hospital admissions and discharges.
• Managing appointments.
• Advocating with professionals.
• Navigating complex systems.
• Supporting multiple family members simultaneously.

I spoke about how difficult it can be when carers are not listened to or involved in important decisions.

I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.

One of the central themes of my presentation was carers’ rights.

I encouraged carers to:

• Identify themselves as carers.
• Seek support from local carers organisations.
• Request carers assessments.
• Learn about their rights.
• Participate in co-production and service improvement.
• Share their experiences to help reduce stigma.

To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.

Afternoon Reflections and Future Priorities

The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.

Discussions focused on:

• Improving identification of carers.
• Supporting carers before crises occur.
• Encouraging carers to access support services.
• Learning from positive experiences of care.
• Strengthening partnerships between carers and professionals.

Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.

Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.

Key Messages from the Day

Several important messages emerged consistently throughout the event:

Carers Need Recognition

Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.

Carers Need Practical Support

Information, respite, emotional support and financial advice remain essential.

Carers Must Be Involved

Carers are experts in the lives of the people they support and should be treated as partners in care.

Young Carers Need Protection

Children and young people with caring responsibilities require dedicated support and opportunities to thrive.

Communities Matter

Strong local networks can help reduce isolation and improve wellbeing.

Prevention Is Better Than Crisis Management

Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.

Conclusion

The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.

Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.

Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.

As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.

The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.

Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.

Carers Week 2026: Building Carer Friendly Communities and Supporting Unpaid Carers Across the UK

By Matthew McKenzie – Carer Ambassador

For Carers Week 2026, it takes place from 8–14 June and shines a spotlight on the millions of unpaid carers who provide essential care and support to family members, friends and loved ones throughout the UK.

This year’s theme, Building Carer Friendly Communities, highlights the need for workplaces, healthcare services, schools, local authorities and communities to better recognise and support unpaid carers.

Despite contributing billions of pounds worth of care each year, many unpaid carers continue to face challenges including financial hardship, social isolation, poor mental health and difficulties accessing support. So Carers Week aims to raise awareness of these issues while encouraging practical action to create a society where carers are valued, respected and included.

As a carer activist and founder of my site A Caring Mind, I am sure that creating carer-friendly communities starts with understanding the realities of caring. Whether you are caring for an ageing parent, a disabled child, a partner with a long-term condition or someone experiencing mental ill health, carers play a vital role in keeping families and communities together.

However, there are still many people do not identify themselves as carers and therefore miss out on important support, benefits and services. Carers Week 2026 provides an opportunity for individuals, organisations and policymakers to listen to carers’ experiences, champion carers’ rights and improve access to support for unpaid carers across the UK.

Watch my Carers Week 2026 video below to learn more about the campaign, this year’s theme and how you can get involved in supporting unpaid carers. Please share the video to help raise awareness and encourage more people to recognise the invaluable contribution that carers make every single day.

Together, we can build stronger, more inclusive and more carer-friendly communities

National Ethnic mental health Carer Forum : May Update 2026

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.

Resources and Links Shared During the Meeting

Mental Health Act Research Study

Email:
nrmha@ucl.ac.uk

Eligibility:
People aged 16+ who have experience supporting someone assessed or detained under the Mental Health Act.

Nearest Relative Resources Website

Welcome to the resources

Nearest Relative Resources Impact Report

https://bpb-eu-w2.wpmucdn.com/blogs.bristol.ac.uk/dist/a/1212/files/2026/05/2026-05-Nearest-Relatives-Resources-impact-report.pdf

POPs Facebook Group

https://www.facebook.com/groups/POPSUnitedKingdom

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.

Voices & Verses PCREF Carer event

By Matthew McKenzie, Cygnet PCREF Carer Lead

On Tuesday 28th April 2026, from 2:00pm to 4:00pm, we came together at Cygnet Churchill in Lambeth for what was described as a carers poetry event, but in truth, it became something much deeper.

It became a space where carers could speak, reflect, and be heard.

I hosted the session not just as a PCREF Carer Lead, but as someone with lived experience. That shaped everything the tone, the structure, and the intention behind every part of the agenda.

I made it clear: this was a safe, inclusive, and optional space. No pressure to perform. No expectation to share. Just an invitation.

We began with a simple check-in:
“What’s one word you’re arriving with?”

Opening Readings: Creating a Shared Starting Point

I started with a couple of my own poems, drawn from my work around carers, stigma, and racial inequality in mental health.

As shown above, one piece explored the question of who is listened to and who is overlooked within systems. Another focused on stigma and shame, particularly how cultural expectations and institutional barriers can compound the experience of caring.

These weren’t just readings—they were a way of opening the room.
An invitation for others to see themselves reflected.

Featured Performer: Karen Ibrahim

We then heard from Karen Ibrahim, whose poetry captured something deeply familiar to many carers the quiet, often invisible emotional labour of caring.

Her piece reflected the silence between carer and loved one, the fear of saying the wrong thing, and the reality of sitting with someone in distress without always knowing how to help. It spoke to that fragile balance carers hold every day.

Karen also shared a series of haiku-style reflections, drawn from carer experiences—short, powerful snapshots of emotion, nature, and coping. They reminded us that even the smallest expressions can carry deep meaning.

Guided Writing Exercise #1: Bringing PCREF to Life

We then moved into the first guided writing exercise.

I paired participants and asked them to:

  • Match PCREF-related concepts (like equity, advocacy, inclusion, resilience) to their meanings
  • Use those words to create a short poem or reflection

It was about translating PCREF from policy into lived language.

The results were powerful. Carers wrote about 4 poems altogether, below were the themes, which will be included in the new PCREF poetry book I am working on.

  • Feeling unseen and unheard
  • Wanting their voice recognised
  • Breaking down barriers in care
  • Finding strength through community

One group asked:
“Is my voice not loud enough to be heard?”

I felt that line stayed with me, because it captures exactly what PCREF is trying to address.

Performer & Open Mic (Round 1)

We then moved into our first round of performances, where carers shared both prepared and newly written work.

I felt Brenda brought something unique, blending cultural storytelling and poetry rooted in Jamaican heritage. She reflected on traditional knowledge, community wisdom, and the use of language and folklore as a way of preserving identity and healing. Her use of dialect and storytelling highlighted how culture shapes how we express and understand care.

Next was Annette Davis shared a piece centred on the identity of being a carer, capturing the emotional strain, lack of recognition, and inner strength that comes with the role. Her poem questioned what it means to be labelled a “carer” while navigating burnout, resilience, and the need for self-care.

Next up was Faith Smith and Nadine sharing a powerful reflection on system inequality, exploring the daily pressures of navigating services, the lack of accessible support, and the feeling of being caught in processes that don’t always respond to real-life needs.

Each piece added another layer to the conversation, with different perspectives, but shared truths.

Break & Connection

We paused for a short break and refreshments provided by the kind and wonderful staff at cygnet, but for the poetry event the conversations didn’t stop.

Carers continued to connect. Share stories. and reflected on what they had heard.

This is something I always emphasise, community doesn’t just happen in structured sessions. It happens in those in-between moments.

Creative Exercise session #2: Exploring PCREF Language

After the break, I introduced a second exercise, which was more interactive and reflective.

Participants worked with a word-search style challenge, identifying key PCREF-related terms such as:

  • Voice
  • Inclusion
  • Equity
  • Community
  • Trust
  • Advocacy
  • Listening
  • Stereotyping

Rather than writing full poems, we focused on discussion:
Which word stands out and why?

The responses were honest and grounded:

  • “Listening builds trust.”
  • “Community is where we belong.”
  • “Inclusion is what drives change.”
  • “Stereotyping still shapes how we’re treated.”

This is where PCREF becomes real, when people recognise themselves within it.

Performer & Open Mic (Round 2)

We continued with a second round of performances.

Carers shared reflections shaped by:

  • Cultural identity
  • Personal caring journeys
  • The emotional impact of systems
  • Hope, resilience, and change

Then ended with cultural carer songs by Brenda, see the video of part of the PCREF poetry session below.

In the end PCREF is about improving outcomes for racialised communities—but it cannot succeed if it remains purely clinical.

We:

  • Translated PCREF into lived experience
  • Used creativity to engage carers meaningfully
  • Created a culturally responsive space
  • Positioned carers as equal voices not passive participants

If you are caring for someone using Cygnet services, contact Family&Friends@cygnethealth.co.uk to join our Voices & Verses poetry group

Attending the West Kent Paddock Wood Carers Group

By Matthew McKenzie – Carer Activist

Recently, I had the privilege of attending and speaking at the West Kent Paddock Wood Group, and I wanted to take a moment to reflect on the experience, not just as a speaker, but as a mental health carer among peers who truly understand the journey.

The session took place at Unit 1 Eastlands, Maidstone Road in Paddock Wood, a welcoming and accessible venue that immediately set the tone for openness and support. From the moment I arrived, it was clear that this was a safe space. The event was hosted by Naomi Muigua who is the Social Care Involvement Officer.

The structure of the morning was thoughtfully organised, with time for introductions, discussion, and shared learning, all underpinned by respect, confidentiality, and equality among attendees .

A Community that works to understand carers

What stood out to me most was the diversity of lived experience in the room. Carers supporting loved ones with dementia, autism, and complex health needs came together, each bringing their own story, challenges, and resilience. It reinforced something I’ve long believed: carers often feel invisible in wider society, but in spaces like this, they are seen, heard, and valued.

The group is supported by organisations and professionals who are genuinely committed to reducing isolation and improving access to services. From digital inclusion to transport and community support, there’s a real effort to make sure carers are not left navigating the system alone

Sharing My Journey as a Mental Health Carer

As the invited speaker, I spoke from my own lived experience as a mental health carer. My journey began as a young carer supporting my mother, who developed schizophrenia, while also helping care for my brothers with non-verbal autism. Over the years, that experience has shaped not only my life, but my purpose.

During my talk, I shared:

  • The emotional reality of becoming a carer—often suddenly, without preparation
  • The confusion and isolation that can come with navigating mental health systems
  • The importance of recognising carers as partners in care, not just bystanders
  • The long-term impact on mental health, identity, and wellbeing

I also spoke about the concept of “lived experience”—something I feel strongly should be embedded in health and social care systems. If professionals are to truly understand and support carers, they need to hear directly from those who live it every day.

One of the key messages I left with the group was this:
Carers are the hidden link that holds everything together. Without them, the system simply could not function.

This was taken from my poem off my book.

The Conversations of the group

What made the session particularly powerful wasn’t just the presentation, it was the discussion that followed. Carers openly spoke about:

  • Not knowing where to go for help
  • The complexity of accessing services
  • Feeling that outcomes often depend on how well you can advocate
  • The emotional toll of long-term caring

These are not small issues, they are systemic challenges. But spaces like this group allow those conversations to happen honestly, and more importantly, collectively.

Why Groups Like This Matter

The West Kent Paddock Wood Group is actually a lifeline to carers as it provides:

  • A supportive peer network
  • Access to information and local services
  • A platform for carers’ voices to be heard
  • A sense of belonging that many carers lack

For anyone who is caring for a loved one, especially in mental health, I cannot stress enough how important it is to connect with others who understand. You don’t have to do this alone.

Final Thoughts

Leaving the session, I felt both humbled and encouraged. Humbled by the strength of the carers in the room, and encouraged by the existence of a group that is actively working to support them.

If you are a carer in Kent, or even just exploring what support is available, I would strongly recommend attending the West Kent Paddock Wood Group. It is a space where your voice matters, your experience is valid, and your wellbeing is recognised.

For me, it was not just an opportunity to speak, it was an opportunity to connect, learn, and continue advocating for carers everywhere.

If you want to find out more about Kent County Council support for unpaid carers, see link below.

https://www.kent.gov.uk/social-care-and-health/adult-social-care/care-and-support/caring-for-other-people/support-for-carers

Nothing About Us Without Us: A Poem on Carer Voice and Co-Production

By Matthew McKenzie – Carer

I feel Unpaid carers play a vital role in supporting loved ones experiencing mental health challenges. Much of this caring happens quietly in homes, during sleepless nights, through appointments, advocacy, and everyday acts of protection and support.

For many carers from minority communities, this experiences also includes navigating the cultural understanding, language differences, and systems that sometimes do not always recognise or reflect communities. Despite the knowledge carers hold, I feel our voices can sometimes feel overlooked in those decisions about care.

I recently wrote and recorded a short spoken word poem titled “Nothing About Us Without Us.” This poem reflects a simple and important message: carers bring lived experience that should be included in conversations about mental health services.

The poem is taken from the book I am developing called “Unpaid, Unseen and Yet Unbroken”

Carers are not just supporters in the background. Carers can carry knowledge shaped by lived reality by caring, advocating, and supporting our families through complex systems.

The poem also speaks to the importance of co-production. When carers, communities, and professionals work together, services can become more understanding and culturally responsive, and equitable.

I think this message is especially relevant to ongoing work around the Patient and Carer Race Equality Framework (PCREF), which encourages meaningful involvement of people with lived experience in shaping mental health services.

The poem is a small creative contribution to that conversation. It invites us to reflect on a few simple questions:

  • Are carers from different backgrounds being listened to?
  • Are those lived experiences shaping services?
  • Are decisions being made with carers, not about them?

Listening to carers is not just a gesture of inclusion it can lead to better understanding, stronger partnerships, and better care.

If you would like to watch the poem, you can find the video here:

I hope my poem encourages reflection and conversation about how we can continue building services with communities, and not just for them.

Involve Kent Carers’ Forum – 25th February 2026

By Matthew McKenzie

On 25th February 2026, I had the privilege of speaking at the Carers’ Forum hosted by Involve Kent.

Involve is a voluntary sector infrastructure organisation in Kent that supports unpaid carers by providing information, advice and practical help to make caring more manageable.

They organise regular carers’ forums and events where carers can meet each other, access specialist support services, hear from guest speakers on issues like benefits, legal rights and wellbeing, and contribute their lived experience to local planning and decision-making. Involve also connects carers with tailored resources, signposts to relevant services across health, social care and community sectors, and advocates for carers’ voices to be heard by policymakers and service providers

The forum ran from 10:30am to 1:30pm and brought together unpaid carers from across Kent to connect, learn and have their voices heard.

It was my second time speaking at this forum, and once again I was struck by something powerful: the room was full. That might sound simple, but in the world of unpaid caring which can often feel isolating and invisible a full room means solidarity. It means people are choosing, despite exhaustion and competing demands, to show up for themselves and each other.

Arriving and the atmosphere

From the moment I walked in, there was a real sense of warmth. Information stands lined the hall Involve, Citizens Advice, mental health services, energy advice, leisure services and more. Tables were covered in leaflets, conversations were already flowing, and carers were reconnecting with familiar faces.

The purpose of the forum was clear:

To enable those caring unpaid for an adult family member, partner or friend to meet, gain information about services in their community and have their voices heard .

That last part to have their voices heard is what resonated most with me.

It was also good to see Carer leads from Cygnet Maidstone engaging with carers in the community of Kent.

My talk: Caring for someone with a mental health diagnosis

I spoke about caring for someone with a mental health diagnosis and the Patient and Carer Race Equality Framework .

As many know, I cared for my mother who lived with schizophrenia, and I now support a close friend who lives with personality disorder and addiction challenges. I don’t speak as a clinician. I spoke as someone who has sat in GP waiting rooms, on inpatient wards, in crisis meetings, and at home during those “screaming silences” that carers know too well.

I shared:

  • The confusion I felt when I didn’t even realise I was a “carer”
  • The frustration of confidentiality barriers
  • The loneliness of not being listened to
  • The emotional exhaustion that comes from constantly firefighting crises

I then shared a poem to promote carers rights

But I also shared something equally important: growth, advocacy and solidarity.

I encouraged carers to:

  • Educate themselves about the condition they are supporting
  • Learn the difference between symptoms and personality
  • Understand triggers
  • Forgive themselves for mistakes
  • And most importantly, look after their own wellbeing

One message I always return to was – You cannot pour from an empty cup.

I also spoke about The Patient Carer Race Equality Framework

It exists because there is clear evidence of:

  • Disproportionate detentions under the Mental Health Act
  • Poorer outcomes for Black and minority ethnic patients
  • Higher levels of distrust between communities and services
  • Carers feeling unheard or excluded

I spoke about how minority carers can face:

  • Cultural misunderstandings
  • Language barriers
  • Stigma around mental health within communities
  • Fear of services due to past discrimination
  • A lack of culturally appropriate support

Discussion tables: Carers influencing change

After my talk, Clara from Involve led discussions feeding into Kent’s Health Needs Assessment for carers. Carers were asked:

  • How do you recognise when it’s time to ask for help?
  • What causes burnout?
  • What would a carer-friendly community look like?

These wete not token questions. Staff took notes (without identifying details) so carers’ lived experiences could directly inform local planning .

I moved around the room speaking with carers. Some were open and vocal. Others were quieter, but their listening was just as powerful. Not everyone wants to speak publicly and that’s okay. Being present is also participation too.

Power of Attorney – protecting your voice

Later in the morning, Glen Miles spoke about the Mental Capacity Act and Lasting Power of Attorney .

As carers, we often assume we will automatically be consulted in crises. The reality is different. Without legal authority, our ability to advocate can be limited.

One key takeaway:

  • Don’t delay in arranging Lasting Powers of Attorney.
  • If you want your voice – or your loved one’s voice – to be heard, formalise it.

For carers who have experienced being excluded from decisions, this was a particularly important session.

Citizens Advice & practical support

Ian from Citizens Advice spoke before lunch about benefits, debt, housing and confidential support .

With the cost of living crisis, carers are under immense financial pressure. Many reduce employment hours or leave work entirely. The session was a reminder that:

  • Advice is free
  • It is confidential
  • You can attend anonymously
  • You are not judged

Lunch followed – catered by Fusion – and honestly, some of the most meaningful conversations happen over sandwiches. Carers swapping stories. Sharing phone numbers. Recommending services. That peer-to-peer support is priceless.

What stayed with me

What stayed with me most wasn’t just the agenda or the presentations.

It was:

  • The older carer quietly nodding as I spoke about emotional exhaustion.
  • The new carer asking, “Is it normal to feel this angry sometimes?”
  • The male carers who stayed behind to speak to me privately.
  • The carers from minority backgrounds who spoke about cultural barriers and stigma.

These forums matter because carers matter.

Unpaid carers save the system billions. But beyond economics, we hold families together. We absorb crises. We advocate in rooms where we’re not always welcomed.

Involve Kent (Carers’ Support – West Kent)

Address:
30 Turkey Court, Turkey Mill, Ashford Road, Maidstone, Kent, ME14 5PP

Telephone: 03000 810 005
General email: hello@involvekent.org.uk
Carers support contact: communitynavigation@involvekent.org.uk
Website: http://www.involvekent.org.uk