Tag Archives: mental health

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 Carers Forum Update – July 2026

By Matthew McKenzie – Chair of the South London MH carers forum

Another month has passed, and I would like to thank everyone who joined our South London Mental Health Carers Forum. It was fantastic to welcome carers, NHS professionals, voluntary sector organisations and local authority representatives from across South London to discuss issues affecting unpaid mental health carers.

As always, the forum provides a safe place where carers can raise concerns directly with decision makers, hear about new developments, share experiences and help shape improvements across mental health services.

For those who were unable to attend, here is a detailed summary of the meeting.

Welcome and introductions

We welcomed carers from across Lewisham, Lambeth, Southwark, Croydon, Richmond and surrounding boroughs, alongside representatives from:

  • Lewisham GP Mental Health Transformation
  • Carers First Croydon
  • Carers Hub Lambeth
  • POWHER (NHS complaints advocacy)
  • Southwark Council
  • Carers with lived experience
  • Voluntary sector organisations

The strength of the forum continues to be its mix of lived experience alongside professionals willing to listen directly to carers.

One particularly encouraging update at the beginning of the meeting was confirmation that South London and Maudsley NHS Foundation Trust (SLaM) is reviewing its Triangle of Care work and wishes to involve carers more closely in that process.

This is extremely important because Triangle of Care is one of the main national frameworks that helps mental health services work better with families and unpaid carers.

Lewisham Mental Health Transformation Update

Our first guest speaker was Dr Anna Robinson, GP Clinical Lead for Mental Health Transformation in Lewisham.

Dr Robinson explained that one of her main priorities is improving communication between GP practices and specialist mental health services. She recognised that many of the difficulties experienced by carers occur during transitions, particularly when someone moves between primary care and secondary mental health services. To help address this, she has already begun bringing together GP leaders and mental health professionals, creating opportunities for closer collaboration and establishing direct communication channels, including a new WhatsApp group linking GPs with mental health clinicians so concerns can be discussed more rapidly. She hopes these improvements will lead to better referral pathways, clearer discharge arrangements and more consistent communication between services.

Improving communication between GPs and mental health services

One of the biggest priorities is improving communication between GP practices and specialist mental health services.

Many carers know only too well how stressful it can be when someone is discharged from secondary mental health care back to their GP.

Communication delays often create uncertainty about:

  • medication
  • follow-up care
  • relapse planning
  • physical health monitoring
  • who is actually responsible for ongoing care

To improve this, Lewisham has already begun bringing together GPs and mental health clinicians, including establishing direct communication channels so problems can be discussed much more quickly.

This was welcomed by carers, although many explained there remains considerable work to do.

Carers’ biggest concern: discharge back to GPs

This became the largest discussion of the afternoon.

Many carers expressed anxiety about people with severe mental illness being discharged from community mental health teams back to primary care.

Some of the concerns raised included:

  • GPs may not know the patient as well as specialist teams.
  • Carers worry relapses may not be identified quickly enough.
  • Missed appointments are sometimes an early warning sign rather than a sign that someone is well.
  • Some medications require specialist monitoring.
  • Communication between services is still inconsistent.

One carer explained that if someone experiencing psychosis fails to attend appointments, it should trigger concern rather than assumptions that everything is fine.

Another highlighted that patients can sometimes cancel appointments themselves, meaning clinicians may never realise there is actually a developing crisis.

Dr Robinson acknowledged these concerns and confirmed they are exactly the type of issues she wishes to improve through stronger collaboration between GP practices and specialist services.

Early identification of mental illness in schools

Another important discussion focused on children and young people.

One parent shared how concerns about their child’s mental health had been dismissed at school months before a serious psychotic episode eventually occurred.

This led to discussion about whether all school staff should receive training to recognise early signs of serious mental illness as part of safeguarding training.

Dr Robinson explained that Lewisham is expanding mental health support teams in schools and is also developing alternative services for young people because traditional CAMHS services remain under enormous pressure.

The discussion highlighted how earlier recognition may prevent future crises for some young people.

Universal Care Plans and identifying carers

During the discussion I raised the growing use of the Universal Care Plan (UCP) across London.

One area we discussed was whether GP surgeries are identifying unpaid carers more effectively.

Many carers are still not recorded as carers within GP systems, meaning they may miss out on:

  • health checks
  • vaccinations
  • support services
  • referrals
  • carers’ information

Dr Robinson confirmed GP systems can record carers through coding, but acknowledged this often depends upon carers identifying themselves.

This remains an important challenge because many people caring for relatives still do not think of themselves as “carers.”

Better identification continues to be essential if carers are to receive the support they deserve.

The discussion also broadened into medication safety, the role of GPs in supporting people with long-term mental health conditions and the identification of unpaid carers within GP practices. A carer shared her own lived experience of being misdiagnosed and suffering severe adverse reactions to medication before eventually receiving the correct diagnosis and treatment. Dr Robinson acknowledged that medication can sometimes initially worsen symptoms and stressed the importance of clinicians discussing potential side effects openly with patients.

As I raised questions about the rollout of Universal Care Plans and whether GP surgeries are preparing to identify carers more effectively through SNOMED coding and improved care planning. Dr Robinson explained that GP systems can record carers, although this often depends upon carers identifying themselves, and recognised that many people providing substantial care still do not see themselves as carers. The discussion reinforced the importance of improving carer identification, strengthening communication between services and ensuring carers are recognised as genuine partners in care rather than remaining invisible within the healthcare system

Carers First Croydon

Our second presentation came from Carers First, the organisation delivering carers’ services across Croydon.

Jessica and Toby introduced their service and explained how they are developing support specifically for unpaid carers, including those caring for someone with mental illness.

Although their service supports all carers, they recognised that mental health carers often experience unique challenges.

These include:

  • confidentiality barriers
  • crisis situations
  • unpredictable relapses
  • emotional exhaustion
  • isolation
  • uncertainty around care planning

Their presentation showed a genuine understanding of the pressures faced by mental health carers.

I agree. For a blog, that section reads more like meeting notes than an article. Here’s a much smoother narrative version that still captures the main points without relying on long bullet lists.

Carers First Croydon: Supporting Carers Before Crisis

The organisation commissioned by Croydon Council to provide support for unpaid carers across the borough. Jessica and Toby introduced the service and explained how they are working to ensure carers receive support much earlier in their caring journey, rather than only when they reach crisis point. Although the organisation supports carers of all ages and caring situations, they recognised that those caring for someone with mental ill health often face unique challenges, including emotional exhaustion, confidentiality issues, unpredictable relapses and the constant uncertainty that can accompany serious mental illness.

A key message throughout the presentation was that support for carers needs to be holistic. Carers First offers statutory carers assessments, practical advice, emotional support, peer support and wellbeing activities, but these conversations extend far beyond simply discussing the caring role. Staff work with carers to understand the wider impact that caring has on everyday life, including issues such as employment, finances, poor sleep, housing difficulties, physical health and emotional wellbeing. The aim is to identify the pressures that make caring more difficult and then work alongside carers to find practical solutions, whether through grants, referrals to other organisations, respite opportunities or local wellbeing services.

The presenters emphasised that many carers wait too long before asking for help, often believing they should simply cope on their own. By the time support is requested, carers may already be physically and emotionally exhausted. Carers First hopes to change this by encouraging earlier referrals from GPs, mental health services and carers themselves, allowing support to be put in place before problems become overwhelming. The earlier carers receive advice and practical assistance, the more likely they are to maintain both their own wellbeing and their ability to continue caring.

There was also a strong focus on carers’ own health and wellbeing. The presenters spoke about activities such as carers cafés, Qigong sessions, volunteering opportunities and wellbeing programmes, not simply as recreational activities, but as an essential part of sustaining carers over the long term. One particularly powerful message from the presentation was that self-care should never be viewed as a luxury or something to feel guilty about. Instead, looking after carers is fundamental to maintaining safe, sustainable caring relationships. By supporting carers emotionally, socially and practically, organisations like Carers First help ensure that carers themselves remain healthy enough to continue supporting the people who rely upon them.

Southwark Council Engagement: Safeguarding Review

Later in the meeting we welcomed representatives from Southwark Council, who attended to discuss the council’s current review of safeguarding arrangements and, importantly, to hear directly from carers about their experiences. The discussion recognised that safeguarding is not simply about responding to abuse or neglect, but about ensuring that people with mental health needs receive safe, person-centred care while families and carers are appropriately involved throughout the process.

The review aims to strengthen safeguarding by making it:

  • More consistent across services.
  • More proportionate to individual circumstances.
  • More person-centred and focused on outcomes.
  • Better at involving families and carers where appropriate.
  • More responsive to concerns raised by people with lived experience.

Council representatives emphasised that this was not simply a consultation exercise but an opportunity for carers to genuinely influence how safeguarding develops in Southwark. Those attending the forum were encouraged to continue sharing their experiences so that future improvements are informed by the realities of supporting someone with mental illness.

Questions and discussion

The discussion that followed highlighted a number of recurring themes experienced by carers across South London.

Several carers explained that they often recognise subtle changes in a person’s behaviour weeks before professionals become aware that something is wrong. As the people who know their relative best, carers felt that their observations should be taken more seriously when concerns are first raised, particularly where there is evidence of deteriorating mental health or increasing risks.

Questions were also raised around how safeguarding concerns are assessed and whether professionals always communicate effectively with families once a concern has been reported. Some carers described occasions where they were uncertain about what action had been taken, what the next steps were, or whether their concerns had been fully understood.

There was also discussion about balancing confidentiality with safeguarding responsibilities. Whilst recognising the importance of protecting an individual’s rights, carers emphasised that excluding families from conversations can sometimes mean valuable information about risks, changes in behaviour or previous crises is overlooked. Many felt that better communication with carers could strengthen safeguarding rather than compromise it.

Another important point raised was that safeguarding should not only focus on responding after a crisis has occurred. Instead, carers felt services should recognise early warning signs, intervene sooner where possible and view carers as partners in identifying emerging risks before situations escalate.

The representatives welcomed these reflections and acknowledged the value of hearing directly from lived experience. They encouraged carers to continue engaging with the review process so that future safeguarding arrangements better reflect the realities faced by families supporting someone with serious mental illness.

Lambeth Update

We were also pleased to receive an update from Karen Ibrahim, Mental Health Carers Coordinator at Carers Hub Lambeth, who shared a number of developments taking place across the borough to improve support for unpaid carers.

Karen explained that Carers Hub continues to expand its offer to carers, with several new initiatives now available. One of the most significant developments is the introduction of the Lambeth Carers Card, which is intended to help carers identify themselves more easily when accessing services and encourage wider recognition of the vital role unpaid carers play. Alongside this, Carers Hub has strengthened its welfare benefits support, enabling carers to access specialist advice on benefits, financial entitlements and income maximisation, an increasingly important service given the financial pressures many carers continue to face.

Another important area of work has been raising awareness of carers throughout local services. Karen described the continued delivery of carers awareness training for professionals, helping frontline staff better understand carers’ rights, the challenges families experience and why carers should be recognised as partners in care rather than simply relatives accompanying patients. She also highlighted the ongoing development of the Lambeth Mental Health Carers Group, which continues to provide carers with opportunities to share experiences, influence local services and receive peer support from others who understand the realities of caring for someone living with mental illness.

Questions and discussion

The discussion then moved towards some of the more difficult experiences carers continue to face within inpatient mental health services.

One issue raised was the safety of inpatient wards, with concerns expressed about incidents involving patient-on-patient violence and the emotional impact these situations can have on both patients and their families. Carers discussed the importance of ensuring that safety concerns are taken seriously and that families are kept appropriately informed when incidents occur.

Questions were also asked about how carers’ concerns are escalated when they believe someone is at risk or when communication between staff and families begins to break down. Karen acknowledged that these situations can be extremely distressing for carers and stressed the importance of maintaining open communication between inpatient teams, community services and families wherever possible.

The discussion also reinforced the wider importance of involving carers throughout a person’s mental health journey, rather than only contacting families during periods of crisis. Participants agreed that carers often hold valuable knowledge about changes in behaviour, early warning signs and previous experiences of relapse, and that this lived experience should be recognised as an important contribution to safe and effective care.

Karen thanked carers for continuing to share their experiences and encouraged everyone to remain engaged with Carers Hub Lambeth, emphasising that feedback from carers plays a vital role in helping improve local mental health services and ensuring carers’ voices continue to influence future developments.

Looking ahead

Our forum will continue bringing together carers, NHS services, local authorities and voluntary organisations to improve mental health support across South London.

If you are an unpaid mental health carer living in South London, you are always welcome to join us.

Together we can continue raising carers’ voices, influencing services and helping ensure that carers are recognised not simply as visitors to mental health services, but as valued partners in care.

Triangle of Care Community Meeting: July 2026 update

By Matthew McKenzie – Triangle of Care – Community group chair

Putting Carers at the Centre of Care

The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.

One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.

Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.

Progress Across the Triangle of Care Programme

Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.

Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.

Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.

The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.

Advancing Equality Through the Patient and Carer Race Equality Framework

A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.

PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.

The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.

Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.

Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.

Confidentiality, Information Sharing and Carer Inclusion

Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.

Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.

Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.

Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.

Triangle of Care Principles Within Acute Services

The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.

Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.

Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.

Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.

Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.

Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.

Looking Ahead

The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.

Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.

Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.

The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.

Alcohol Awareness Week 2026 – Alcohol and Me

This week (6–12 July) marks Alcohol Awareness Week 2026, organised by Alcohol Change UK. This year’s theme, “Alcohol and Me,” encourages us to take a moment to reflect on our own relationship with alcohol and the impact it can have on our health, mental wellbeing, relationships and everyday lives.

For many unpaid carers supporting someone with a mental health condition, life can be emotionally demanding. While we often focus on the person we care for, it’s just as important to look after our own wellbeing. This campaign reminds us that seeking support, talking openly and making small positive changes can make a real difference.

To support this important awareness week, I’ve created a new video on my YouTube channel, A Caring Mind, exploring why Alcohol Awareness Week matters, particularly for carers and families affected by mental ill health.

If this post resonates with you, please share the video to help raise awareness, reduce stigma and remind carers that their wellbeing matters too.

For more information about Alcohol Awareness Week and the “Alcohol and Me” campaign, visit Alcohol Change UK: https://alcoholchange.org.uk/get-involved/campaigns/alcohol-awareness-week-1

Greenwich Mental Health Carers Forum – June Update

By Matthew McKenzie – Chair of the Greenwich MH carers forum

The forum continues to provide a safe space for carers to receive updates, influence local services and learn about developments that affect both carers and the people they support.

This month’s forum focused on three important themes:

  • New support available for carers through the Greenwich Mental Health Hub.
  • Major reforms to the Mental Health Act and what they mean for carers.
  • Why unpaid carers must continue to have a voice in shaping local mental health services.

New Mental Health Support for Carers

We were pleased to welcome Jana, Mental Health Carers Advisor from the Greenwich Mental Health Hub, who introduced a relatively new service specifically supporting carers experiencing their own mental health difficulties.

Many carers spend years putting someone else’s wellbeing first while their own emotional health suffers. Stress, anxiety, depression, trauma, loneliness and exhaustion are common experiences among unpaid carers. The Mental Health Hub aims to provide early support before these issues become more severe.

The service accepts referrals primarily through GPs and offers:

  • Individual mental health assessments
  • Short-term personalised support
  • Advice on carers’ rights
  • Signposting to benefits, housing and community organisations
  • Emotional wellbeing support
  • Practical coping strategies
  • Access to peer support groups

Support can be delivered face-to-face, online or by telephone, making it more accessible for carers with demanding caring responsibilities.

One particularly welcome development is the dedicated carers’ drop-in sessions, which are open even to carers who have not been referred into the Hub. These sessions provide opportunities to discuss issues such as:

  • Sleep difficulties
  • Self-care
  • Stress management
  • Accessing local services
  • Benefits advice
  • Carers’ Assessments
  • Meeting other carers facing similar challenges

As carers repeatedly tell us, simply speaking with someone who understands the realities of caring can make an enormous difference.

Carers Continue to Raise Important Gaps

One of the strengths of the forum is that carers are able to raise concerns directly with professionals.

During the discussion several important issues were highlighted.

Many carers continue to experience difficulties navigating complex mental health systems and understanding their rights.

Questions were raised about the lack of specialist advocacy for mental health carers in Greenwich. While support and signposting are available, carers discussed how independent advocacy can be invaluable when attending meetings, challenging decisions or ensuring their voice is properly heard during difficult situations.

The discussion recognised that navigating the Mental Health Act, hospital admissions and care planning can be overwhelming, particularly for new carers who may have little understanding of the legal processes involved.

These conversations reinforce why forums like this remain so important. They allow carers to identify gaps in services while helping organisations understand where further improvements are needed.

Understanding the New Mental Health Act

A major part of the forum explored the forthcoming reforms to the Mental Health Act.

Although the original Mental Health Act dates back to 1983, significant reforms have now received Royal Assent and will gradually be introduced over the coming years.

These reforms aim to create a more person-centred approach by strengthening:

  • Choice and control
  • Therapeutic benefit
  • Least restrictive care
  • Respect for individual dignity

For unpaid carers, these reforms are particularly significant because they affect how decisions are made when someone is detained for assessment or treatment under the Mental Health Act.

Universal Care Plans and Care Contingency Planning

The forum also introduced another important development currently being rolled out across London: the Universal Care Plan.

This digital record allows important information about both carers and the person they support to be shared appropriately across health and care services.

For carers, this can help:

  • Ensure professionals know who provides care.
  • Reduce the need to repeat information.
  • Improve emergency planning.
  • Support continuity of care.
  • Make carers more visible within NHS systems.

Alongside this sits the Care Contingency Plan, which records what should happen if a carer suddenly becomes unable to provide support due to illness or an emergency.

Many carers have never considered what would happen if they themselves became unwell. Having a contingency plan can prevent crises and ensure continuity of care for vulnerable people.

Local Updates

Greenwich Carers Centre also shared news of a new partnership with the South East London Cancer Alliance. I will be involved regarding my Cancer Caregiver group

The project will establish local peer support opportunities for carers and people affected by cancer, alongside awareness events covering issues such as breast cancer, prostate cancer and wider health and wellbeing topics.

Further information will be shared by Greenwich Carers Centre over the coming months.

Looking Ahead

The Greenwich Mental Health Carers Forum continues to demonstrate why unpaid carers need opportunities to come together.

The discussions during this meeting highlighted both the progress being made and the challenges that remain. Carers continue to advocate for better information, stronger involvement in care planning, improved advocacy services and clearer communication from health professionals.

As the Mental Health Act reforms begin to take shape over the coming years, carers will play an increasingly important role in ensuring these changes lead to meaningful improvements for both carers and the people they support.

If you were unable to attend this forum, we hope this summary has helped keep you informed. We encourage all unpaid mental health carers to join future meetings, share their experiences and help shape the services that support carers across Greenwich.

Carers Week 2026 Round-Up

By Matthew McKenzie – Carer, Campaigner, Author and Speaker

5 June 2026 – Supporting Kent County Council’s Carer Awareness Campaign

Although not officially part of Carers Week, my activities with Kent County Council formed an important part of my ongoing commitment to raising awareness of unpaid carers. I supported the county’s long-term carer awareness campaign by taking part in filming designed to help train council staff to better recognise and support carers.

I also discussed future opportunities to speak at Kent County Council carer groups and continued promoting my own support groups across the county. It was encouraging to see local government investing in carer awareness and recognising the importance of ensuring carers are identified, valued and supported within their communities.

9 June 2026 – Developed Video promotion for Carers Week 2026

I did my bit to raise awareness of Carers Week 2026 via a video I developed, which you can see below.

8 June 2026 – Carers Week Stall at St George’s University Hospital

Carers Week officially began with a rewarding day at St George’s University Hospital, where I hosted a Carers UK information stall. The event provided an opportunity to engage directly with unpaid carers, patients, hospital staff and visitors, sharing information about the support available to carers both locally and nationally.

I was particularly pleased to see the hospital’s dedicated carers information board, which demonstrated a clear commitment to recognising and supporting unpaid carers. Throughout the day, I spoke with many people who were caring for family members and helped raise awareness of carers’ rights, available services and the importance of seeking support. It was a positive start to Carers Week and highlighted the vital role healthcare settings can play in identifying and supporting carers.

10 June 2026 – Ealing Carers Week Celebration at Perceval House

On 10 June, I attended the Carers Week Celebration 2026 at Perceval House in Ealing, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council. As someone who supports both of my elderly parents, I understand first-hand the rewards and challenges of caring. During the event, I had the privilege of hosting a Carers UK information stall while also attending as a carer, poet and author.

The day brought together carers, charities, community organisations, health professionals and council representatives in a welcoming and supportive environment.

Carers had access to information, advice and wellbeing activities, including complimentary refreshments, free manicures provided by Uxbridge College students, artwork exhibitions and opportunities to connect with others who understand the caring journey. The event served as a powerful reminder that carers matter, their voices are important and they should never feel alone.

You can find out more about the event below from Ealing Local Community news

Celebrating carers across the borough

10 June 2026 – Carers Week Parliamentary Drop-In Event, Westminster

Later that day, I attended the Carers Week Parliamentary Drop-In Event at Portcullis House, Westminster. The event brought together unpaid carers, carers’ organisations, MPs and Peers to discuss the realities of caring and the support carers need.

Designed as a speed-networking event, it offered an important platform for carers to share their experiences directly with policymakers and raise awareness of both the immense contribution carers make and the challenges they face. It was encouraging to see parliamentarians engaging with carers and supporter organisations, demonstrating a growing recognition of the need for stronger policies and greater support for unpaid carers across the country.

11 June 2026 – East Sussex Carers Voices Event, East Dean Village Hall

As part of Carers Week, I travelled 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, NHS representatives, local authority leaders, health professionals, carers’ organisations and community groups to discuss how support for carers can be improved.

Hosted by Dr Neil Churchill, Chair of Care for the Carers along with Jennifer Twist CEO of Care For The Carers, the day focused on listening to carers’ experiences and ensuring their voices were heard by decision-makers.

I was honoured to contribute to these discussions and to share insights from my own caring journey. The event demonstrated the value of bringing carers and professionals together to shape services and create positive change for unpaid carers across East Sussex.

12 June 2026 – Speaking at the Cygnet National Carers Event

On 12 June, I had the privilege of speaking at the Cygnet National Carers Event in London as Cygnet’s PCREF Carer Lead, Carer Network Ambassador and carer author. The event brought together carers, healthcare professionals and sector leaders to celebrate carers and discuss the support they need. I shared my experiences as a lifelong carer and highlighted the importance of recognising carers as equal partners in care.

It was inspiring to hear from a diverse range of speakers, including experts by experience, researchers, advocates and service leaders, all united by a shared commitment to improving outcomes for carers. The event reinforced the importance of lived experience in shaping services and ensuring carers’ voices remain central to policy and practice.

13 June 2026 – Carers Community and Support Day at Wells Park Practice

I concluded Carers Week 2026 by hosting a carers information stall alongside Wendy (who is also a devoted carer campaigner at our Lewisham group) at Wells Park Practice during their Carers Community and Support Day.

The event celebrated carers within the local community and provided an opportunity for unpaid carers to access information, advice and support in a relaxed and welcoming environment.

Throughout the afternoon, I spoke with carers about the challenges they face and the services available to help them. The event also highlighted the importance of building a carer-friendly community by recognising carers, understanding the realities of caring and empowering carers to live fulfilling lives. It was a fitting way to end a busy and rewarding week dedicated to championing carers and raising awareness of their invaluable contribution to society.

Reflection

Carers Week 2026 was an incredibly busy and meaningful week, providing opportunities to raise awareness, influence decision-makers, support carers directly and celebrate the extraordinary contribution that unpaid carers make every day.

From hospitals and GP surgeries to Parliament, local authorities and national conferences, the message remained the same: carers are essential, carers deserve recognition and carers must be supported. I am proud to have contributed to so many events throughout the week and remain committed to ensuring that carers’ voices continue to be heard long after Carers Week has ended.

CarersWeek2026, #CarersWeek, #UnpaidCarers, #CarerAwareness, #SupportCarers, #CarersMatter, #NHS, #MentalHealth, #HealthAndSocialCare

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.

Our Stories Matter – Poem by Matthew McKenzie #PCREF

Stories are powerful. They carry memory, experience, and truth in ways that forms and systems often cannot. For unpaid minority carers, our stories are not just reflections, they are essential to understanding the full picture of care.

I’ve recently shared a poem, “Our Stories Matter,” from my upcoming poetry book. It explores the importance of lived experience, intergenerational memory, and the voices that are too often overlooked within health and social care systems.

While assessments, care plans, and clinical notes tell part of the story, they rarely capture the depth of what families and carers experience every day. Our stories provide context. They bring meaning and complete the picture.

This is especially important within the context of PCREF, where recognising lived experience and cultural understanding is key to improving care and addressing inequalities. When carers’ voices are not heard, something vital is missing.

This poem is a reminder that our stories are central.

🎥 Watch “Our Stories Matter” here:
https://www.youtube.com/watch?v=_sVie4YSdbc