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Triangle of Care Community Meeting: December 2025 update

By Matthew McKenzie – TOC Community Chair

Our final Triangle of Care (ToC) Community Group meeting of the year brought together carers, professionals, and ToC members from across the UK to share updates, raise concerns, and discuss priorities for 2026 and beyond. Although Microsoft Teams provided some surprises, we made it work, thanks to teamwork and patience. The conversation was rich, heartfelt, and often very moving.

1. Opening & Agenda

As chair of the meeting, I acknowledged technical teething problems as the group used Teams for the first time in this format. Mary (ToC Programme Lead) welcomed attendees and explained the privacy-driven decision to hide email addresses, which also unfortunately hid attendees’ names. A fix will be implemented before the January meeting.

The agenda included:

Triangle of Care national updates (Mary)
Carer co-production and lived experience input (Matthew)
Surrey & Borders’ co-production example (postponed)
Research priority-setting presentation (Richard, University of Manchester)
Carer questions and discussion

2. Triangle of Care National Update (Mary)

Mary provided a comprehensive end-of-year update structured around ToC’s three priority areas for 2024–25.

2.1 Embedding the Relaunched Triangle of Care Framework

Growth & progress

16 new members have joined the scheme since April, bringing ToC membership to over 80.
The first Welsh hospital achieved a ToC Star Award, prompting the creation of a new Welsh-language logo and Welsh materials.
A social care pilot is underway with Livewell South West, with West Hertfordshire Teaching Hospital reviewing ToC criteria for an acute setting.
Nine Star Awards have been achieved this year, with a further 12 annual reviews approved. Many more annual reports are pending review before year-end.

Standardising data
Mary emphasised the push for consistent reporting across Trusts, including:

numbers of carers identified
uptake of carer awareness training
numbers of carer champions

This will help build a national picture of impact.

Webinars
ToC’s Lunch & Learn series continues, with the recent Carers Rights Day webinar (in partnership with University of Bristol) focusing on the Nearest Relative role under the Mental Health Act (MHA). Resources are available via Carers Trust’s YouTube channel.

2.2 Young Carers: Identification & Support

A major update was the successful national policy win relating to young carers and the Mental Health Act.

Mental Health Act Reform – Safety Net for Young Carers

Following campaigning by Carers Trust, the Young Carers Alliance, and ToC members who wrote to MPs:

Government has agreed to update the MHA Code of Practice to require:
- identification of children when an adult is detained
- sharing of information about available support
- referrals for young carer needs assessments
Updates to advance choice documents will require practitioners to ask about dependent children.
Expected implementation: Summer 2026.

This win was warmly welcomed by the group.

2.3 Racially Minoritised Carers & PCREF

Mary updated members on ToC’s work to ensure carers are fully represented in the Patient & Carer Race Equality Framework (PCREF).

Key updates

A national Task & Finish Group has now completed its review of the first four ToC standards; the final standard is underway.
Piloting of new culturally sensitive criteria is planned with 10 NHS Trusts beginning April 2026.
Example of early good practice: Livewell South West is implementing a new “essential data template” that includes carers, enabling services to better identify and support racially minoritised carers.
Carers Trust is calling for a statutory duty for NHS mental health providers to implement PCREF in full, including community governance.

2.4 Changing the Narrative on Care – New Research

Mary introduced new research (supported by the Health Foundation and Oxfam GB) titled Changing the Narrative on Care, highlighting:

Although 80% of the public value unpaid care, this does not translate into policy action or investment.
Three recommended reframes:
1. Care is a universal experience, not a niche issue.
2. No care without support, make support visible and tangible.
3. Care is a partnership between families, communities and systems—not something families must do alone.

The full report is available on Carers Trust’s website.

3. Carer Involvement, Co-Production & Lived Experience (Matthew McKenzie)

I then presented an in-depth reflection on the value of authentic carer involvement, drawing on his lived experience and his role working with multiple NHS organisations.

Key points included:

Carers are not passive observers, they hold critical lived knowledge that improves services.
Real co-production goes beyond consultation; carers must be equal partners in shaping policy, documentation, training, and strategic decisions.
Examples Matthew gave from his own involvement:
- redesigning welcome packs and leaflets
- addressing confidentiality misapplication
- involvement in recruitment panels
- delivering training to staff at induction
- reviewing complaints and compliments themes
- advising on discharge processes and family-inclusive safety protocols
- participating in research steering groups
Carers’ insight is especially essential in safeguarding, quality boards, and identifying service gaps often invisible to professionals.

4. Surrey & Borders Co-Production Example

A planned presentation from Surrey & Borders was postponed, as the relevant colleague could not attend with materials. They hope to present at a future meeting.

5. Research Priority Setting in Secure & Forensic Mental Health (Richard Kears)

Richard introduced a national project with the James Lind Alliance (JLA) aiming to identify the top 10 research priorities for secure and forensic mental health services across England, Scotland and Wales.

Who is the survey for?

Carers
People with lived experience of secure/forensic services
Staff working in these services
Anyone indirectly connected (victims, families)

Purpose

To ensure future mental health research is led by the real concerns of those most affected, not only by academics or pharmaceutical interests.

Process

National survey gathering research questions.
Analysis to identify common themes.
Second, more focused survey to refine priorities.
National workshops with carers, staff and people with lived experience to finalise the top 10.

A QR code and flyer were shared for distribution. The group expressed strong support.

6. Attendee Discussion & Questions

This was the richest section of the meeting, with many heartfelt contributions. The themes below reflect the key concerns raised.

6.1 Scotland & UK-wide ToC Alignment

A carer asked why Scotland’s ToC framework is separate and not integrated into the UK ToC accreditation model.
Mary explained:

Scotland currently uses ToC only as a free policy framework.
Implementing the accreditation model in Scotland would require groundwork to assess willingness and ability of providers to fund membership.
Integration is being discussed but is not imminent.

6.2 Clarity on Co-Production

Several carers voiced concerns that:

“Co-production” is often used as a buzzword.
Some NHS Trusts label work as co-produced after completing it.
Carers need clarity on what ToC means when using the term.

Mary responded that ToC uses a ladder of engagement, distinguishing:

carer engagement
carer involvement
full co-production

Carers Trust is developing a formal principles-based statement on involvement for future meetings.

6.3 Older Carers: Visibility, Support & Inequalities

The majority of carer questions focused on the unmet needs of older adult carers, many of whom are supporting people with severe mental illness—not dementia—and often have been caring 20–40 years.

Attendees reported:

Feeling “invisible” within both policy and services.
Being incorrectly grouped under “older carers = dementia”.
Their own poor health affecting their caring ability.
Increasing struggle to get responses from professionals.
Serious concerns about who will care for their loved ones when they die.
Feeling less heard as they age, compared with younger carers or newer voices.

One carer (age 78) shared:

“I can’t retire from caring. Benefits stop at 65, but the caring doesn’t.”

Another said:

“We have to shout louder as older women to be heard—and still we aren’t.”

Mary acknowledged the seriousness of these issues and committed to:

bringing older carers’ concerns into ongoing ToC work
exploring dedicated guidance and better mainstreaming within the ToC standards
sharing good practice on carer contingency planning in upcoming meetings

I have placed the guide below

Click to access Carer-Contingency-Planning-in-the-Universal-Care-Plan-Guidance-V1.0.pdf

I also reiterated the group’s role in surfacing policy gaps and influencing future national lobbying.

6.4 Carer Registration & Meeting Access

Several carers raised issues with:

The length of the ToC sign-up form
Not receiving meeting links despite signing up
Verification barriers when joining Teams

Mary agreed to:

review and shorten the form
clarify which fields are optional
address email deliverability issues
adjust MS Teams settings to reduce joining friction while maintaining security

6.5 Concerns About Confidentiality Misuse

One carer reported that in a CQC meeting at an NHS Trust, raising questions about communication was dismissed as “confidentiality”, preventing meaningful dialogue.
I then encouraged carers to bring such examples into:

ToC Star peer reviews
Carer involvement forums
Local advocacy routes

He noted that misuse of confidentiality is a common and unacceptable barrier and must be challenged.

6.6 Petition on Antipsychotic Medication Research

Carers highlighted concerns about:

long-term prescribing of antipsychotics
lack of regular medication review
inadequate research into long-term effects

A carer shared a petition calling for investigation of psychiatric medications. Richard noted that he had signed and shared it previously.

7. Closing Remarks

Matthew thanked all attendees for their honesty, passion and persistence:

“Carers’ voices shape policies and improve care. That is exactly what this group is here to do.”

Mary acknowledged:

the importance of every concern raised
the need to better support older carers
improvements to ToC communications and meeting accessibility
that the next meeting will be in January (provisionally 19th)

The meeting closed with gratitude from carers who said they felt heard, supported, and connected.

National Ethnic mental health Carer Forum : November Update 2025

Chaired by Matthew McKenzie, Lived-Experience Carer

The latest meeting of the National Ethnic Mental Health Carer Forum brought together unpaid minority carers, community partners and four NHS mental Trusts (Avon & Whiltshire were kind enough to be included to update) to explore progress toward the Patient & Carer Race Equality Framework (PCREF), share challenges, and elevate lived-experience voices. As always, I ensured the space remained honest, fast-paced and rooted in what truly matters to ethnic minority carers: being heard, understood and included.

My latest blog for the November forum captures key highlights from each Trust, along with questions raised by attendees, reflecting the critical concerns and lived realities that continue to shape PCREF work across the country.

1. Avon & Wiltshire Mental Health Partnership Trust (AWP)

Focus: Triangle of Care, PCREF oversight, carer champion roles.

Avon & Wiltshire outlined how their PCREF programme is being driven through a clear governance structure, including a central Oversight Group and locality-based meetings. These layers ensure that learning from communities and staff filters upward and influences whole-trust priorities. Their collaboration with Nilaari (I think that is what their called), a long-standing community organisation supporting racially marginalised groups, has been key in grounding their PCREF work in authentic community voice.

A central pillar of their presentation was the strengthening of the Triangle of Care and carer-related PCREF oversight. They recognised that carer involvement cannot rely on goodwill or isolated champions; it requires structurally defined roles, written responsibilities, and consistent organisational expectations. The Trust is working on ensuring that every team and ward embeds a carer champion, whose purpose is not to “do everything for carers”, but to support cultural change within the workforce so that carers are recognised as equal partners.

They emphasised the importance of building staff capacity in cultural humility and safe conversations about race. AWP acknowledged that staff often feel unprepared to discuss ethnicity, discrimination or identity with carers. To address this, the Trust has created psychologically safe internal spaces, particularly for racially marginalised staff—to process experiences and explore how structural and interpersonal inequalities impact both staff wellbeing and patient care. This cultural environment is foundational to PCREF implementation because it shapes how confidently staff engage with diverse carers.

Key Points:

Carer champions must support, not replace, teams in working with carers.
Emphasis on psychological safety for racially marginalised staff and carers.
Encouraging honest conversations around race, trauma, and culture across staff teams.

Questions raised by attendees:

How do you embed cultural awareness within staff teams, not just for carers?
– Concern that staff dynamics and cultural differences must be addressed to create consistent culturally responsive care.
How do staff and leaders hold ‘difficult conversations’ about race and safety?
– Attendees wanted clarity on how psychological safety is practiced and how managers are supported.

🌟 2. Birmingham & Solihull Mental Health NHS FT

(Children & Young People’s Division – “Co-STARS” programme)

Birmingham & Solihull (CYP) presented one of the most detailed and emotionally grounded PCREF programmes, shaped heavily by lived-experience research with Black diaspora families. Their PCREF priorities, knowing our communities, transforming with communities, and delivering care that works reflect a commitment to embedding cultural responsiveness at every step. Their partnership with the University of Birmingham and Forward Thinking Birmingham has produced the Co-STARS project, a blend of lived-experience-led community work and staff training modules.

A major part of their PCREF advancement comes from working intensively with families to capture how racialised parents feel when using services. The Trust shared powerful testimonies from Black carers who described needing to “emotionally self-regulate” in meetings to avoid being labelled angry, unstable or cold. Parents also highlighted the emotional labour of protecting their children from stereotypes such as the “angry Black boy”, as well as fears of being adultified or dismissed. These insights have directly reshaped responses from clinical teams and informed the development of carers’ passports and safe spaces.

Birmingham & Solihull also emphasised building structures to ensure that their care pathways become culturally competent and adaptive. They are embedding PCREF champions across all clinical pathways, from eating disorders to psychosis and autism, ensuring diversity and inclusion principles shape every aspect of assessment, treatment and review. The Trust is also developing e-learning on culturally responsive practice, and expanding identity-specific support spaces (e.g., Black Carers Groups and new plans for Asian carers’ spaces). This multi-layered approach reflects a commitment to PCREF that is both structural and deeply relational.

Key Points:

Embedding culturally competent conversations within CYP teams.
Developing a Black Carers Group and safe spaces for racialised parent groups.
New e-learning on culturally responsive practice (from Co-STARS package).
Use of carer passports to ensure carers feel like equal partners.
Strong focus on how ethnic minority parents feel judged or misread by services (e.g., “angry Black woman,” “cold mother”) – themes drawn directly from carer focus groups.
Recognising adultification, stereotyping, and the emotional labour families perform.

Questions raised by attendees:

What about older adult Black communities?
– Carers questioned how older Black adults, shaped by decades of racism, would be included in PCREF work.
Are you working with the police on cultural awareness?
– Concerns around disproportionate use of Section 136 and stereotypes (e.g., assuming someone is “aggressive” because they speak loudly or gesture).
How will parent–carer voices shape service pathways and outcomes across all diagnoses (e.g., autism, psychosis)?

3. Sussex Partnership NHS Foundation Trust

Sussex Partnership presented PCREF as a three-pillared programme: data, co-production & engagement, and workforce development. Their first priority is improving ethnicity and protected characteristics data, which they acknowledged has historically been inconsistent. Sussex is launching a behavioural-change campaign that involves interviewing service users from minority backgrounds about why they may decline to share ethnicity, alongside staff interviews to understand documentation issues. Their goal is a transparent baseline from which meaningful PCREF action can be driven.

The Trust also described significant investment in a new data infrastructure via Power BI dashboards. These tools will pull together real-time information on areas such as restraint, Section 132 rights, and involuntary detention by ethnicity. The Trust stressed that PCREF cannot function without high-quality data because inequalities must be clearly visible and accessible to teams at every level—from ward managers to executive boards. Their future ambition is to enable quicker identification of disparities and faster interventions that prevent harm.

Sussex’s strongest focus was on building genuine co-production through their Expert Delivery Group (EDG). Unlike past approaches where community partners were only consulted, the EDG is designed as a collaborative decision-making space. Sussex acknowledged up front that phase 1 of PCREF planning did not fully embody equal partnership, and committed to ensuring that phase 2 will be co-produced from the ground up. The EDG will define what co-production means, co-design PCREF implementation plans, and shape updates that reflect community priorities, trust recovery, and anti-racist aspirations.

Key Points:

A behavioural-change campaign to improve ethnicity data recording (currently 65% compliance).
Development of Power BI dashboards for rapid inequality analysis.
Defining anti-racist and cultural competency skills for staff, tied to new EDI training.
Creation of the Expert Delivery Group (EDG) as a collaborative community–trust space.

Questions raised by attendees:

Is this “real” co-production or consultation?
– Attendees challenged Sussex on whether the initial plan was created with the community or presented to them.
How will service users and carers hold equal power within co-production?
How will your anti-racism ambitions be demonstrated externally to communities?
– Attendees expressed concerns that staff training alone does not reassure communities.
How will carers’ needs be embedded in PCREF (Triangle of Care)?

🌟 4. Kent & Medway Mental Health NHS Trust

Presenter: Kamellia (with contribution from Harriet – Lived Experience)

Kent & Medway showcased a comprehensive and governance-driven PCREF structure supported by their Equity for All Assurance Group. The Trust has embedded health inequalities into its broader strategy and is working to ensure that PCREF, protected characteristics data and health equity are woven into everyday practice. With the Trust’s newly updated name and identity, PCREF sits at the centre of a renewed commitment to equitable access, outcomes and patient experience across Kent and Medway.

Their PCREF progress includes delivering cultural competence training to 259 senior leaders, a significant investment in shifting leadership behaviour and expectations. They have also identified major data disparities in areas such as complaints, where ethnicity recording is only around 30%. To address this, they are rolling out the About Me form across their clinical system (Rio), which streamlines demographic and protected characteristics documentation for both carers and patients. This step is being supported by staff training designed to build confidence in discussing sensitive identity-related topics.

Kent & Medway also highlighted the expansion of their new Involvement & Engagement Team, which links directly with communities across East, West and North Kent. They are testing a Health Inequalities Toolkit, improving carer experience data collection, and creating new Family, Friends & Carers forms that capture protected characteristics, communication needs, and whether a carers pack was offered. The Trust’s approach is detailed, structural and long-term, aiming to embed PCREF as part of “business as usual” rather than a separate initiative.

Key Points:

259 senior leaders trained in cultural competence.
New About Me demographic/protected characteristics form launching trust-wide.
Major data gaps identified (e.g., only 30% ethnicity data for complaints).
New Involvement & Engagement Team connecting with community groups.
Testing the Health Inequalities Toolkit .
New Family, Friends & Carers Information Form including carer-pack tracking.

Questions raised by attendees:

Do you provide information in languages other than English?
– Carers stressed that if translations don’t exist, PCREF is inaccessible from the start.
How will carers be supported to attend meetings given their unpredictable caring responsibilities?
How will you gather demographic data for carers when many do not have Rio records?
How will minority groups be reached in areas where the Trust’s population is overwhelmingly White British?

5. Carer Support Organisation (Kent & Medway Carers Support)

Presenter: Donna Green (involve Kent)

Key Points:

They run trust-wide carer experience groups and targeted workshops.
Emphasised difficulty for carers to attend meetings due to constant demands.
Highlighted the need for multiple approaches, including creative well-being sessions.

Closing Reflections from the Forum

I wrapped up the session acknowledging:

The strong desire across Trusts to improve PCREF delivery.
The pressure to progress quickly without losing sight of lived experience leadership.
The need to bring CQC into future meetings for transparency around expectations.
The importance of ethnic minority carers having a forum that values honesty over polished presentations.

Final Thoughts

This month’s forum demonstrated that while progress continues nationally, there remain shared challenges across NHS Mental HealthTrusts:

Recording ethnicity and protected characteristics meaningfully
Embedding anti-racism beyond training modules
Meeting the needs of Black, Asian and other racialised carers
Co-production that is real, not rhetorical
Involving carers whose time and emotional capacity are already stretched
Ensuring safety, trust and humanity in every interaction.

Above all, the session showed that ethnic minority carers are not passive observers they’re leading, questioning, shaping and insisting on accountability at every step.

What Makes for Meaningful Carer Involvement?

By Matthew McKenzie FRSA BEM, Chair, Triangle of Care Community Group

This week’s Triangle of Care Member Webinar, hosted by Carers Trust, which focused on a vital question: What makes for meaningful carer involvement?

We heard from across the Triangle of Care network, these being carers, professionals, and trust representatives coming together to share what genuine involvement looks like in practice.

I spoke about my own lived experience as a carer, supporting two non-verbal brothers with autism and my late mother with mental health challenges and how this journey has shaped my advocacy for stronger partnerships between carers and professionals.

Over the years, through the Triangle of Care, I’ve seen how much difference early and equal involvement can make.

Continue reading →

Lewisham, Southwark & Lambeth carer forum update August 2025

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

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

Lewisham Carers Strategy and Service Updates

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

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

Lambeth Carers Strategy Refresh

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

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

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

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

Southwark Council Carers Support and Strategy Group

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

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

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

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

Update on Key Themes from the final NHS England Carers Conference

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

You can watch the conference below.

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

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

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

Lewisham, Southwark & Lambeth Mental Health carer forum – July 2025 update

By Matthew McKenzie

LLS Carers Forum – July Update: Voices, Concerns & Community Strength

Welcome to the July update for the Lewisham, Lambeth, and Southwark Mental Health Carers Forum. This month’s meeting, chaired by Matthew McKenzie, provided space for powerful updates, critical reflections, and a sobering insight into national developments affecting carer support.

🔸 Growing the Carers Voice

Our forum continues to evolve, bringing together unpaid carers from across boroughs. It remains a space for empowerment, where carers can speak openly, challenge services, and influence support structures. Several attendees introduced themselves and reflected on their caring roles, often crossing borough boundaries and facing ongoing questions about their own place in the system.

🔸 Spotlight: Healthwatch Update

One of the major concerns raised was the planned abolition of Healthwatch England and its local branches, which is a development that has deeply unsettled many in our community.

Anna from Healthwatch Lambeth joined us (on her day off—thank you, Anne!) to explain what’s happening:

Healthwatch functions—listening to service users, signposting, and enter-and-view visits, which are set to be absorbed by local authorities and ICBs.
As a statutory body, Healthwatch cannot be dissolved without legislation, so operations continue for now.
Carers voiced serious concerns over the loss of Healthwatch’s independence and trust, especially as a safe channel for feedback.

Anne reminded us: Healthwatch is still active and listening. A final report on black men’s experiences in Lambeth mental health services is due by mid-August.

🔸 Key Questions Raised

How will services preserve independent feedback mechanisms once Healthwatch is gone?
What accountability structures will replace them?
What are the implications of the broader wave of health service body consolidations?

🔸 Updates from the Ground

We also heard from other carer members:

A carer from Lewisham shared feedback she submitted to the Lewisham Unpaid Carers Forum regarding carer engagement, with little response so far unfortunately highlighting an all-too-common issue.
Other Carers reflected on Lambeth’s carer engagement structures, noting some decline in carer-led decision-making over the years.
Another Carer emphasized the importance of real, consistent carer champions within NHS teams particularly in mental health crisis services.

🔸 Carers Forum Reflections

Matthew provided a helpful comparison between Lewisham and Lambeth carer engagement models. While Lewisham has a formal Unpaid Carers Forum, its independence is limited. Lambeth’s model leans more on the collaborative network and carer support groups. Both boroughs face challenges in consistency, clarity, and co-production.

A concern raised repeatedly: carer champions are often named but rarely visible and sometimes, not even known by their own teams.

📅 Next Forum: August 25 or 26

Due to the bank holiday, the next forum will likely be held on August 26. We’ll aim to have a guest speaker and will explore new ways for carers to hold services to account especially in light of the potential Healthwatch closure.

If you’d like to contribute to future discussions or attend the next forum, please reach out. This is your space.

📣 Let’s continue to speak up, stand together, and push for better mental health support for all carers.

Ethnic mental health Carer Forum Update July 2025

Author: Matthew McKenzie

Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum

On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.

This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.

Highlights from July’s Forum

🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration
Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.

🟣 Powerful Feedback from Carers
Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”

Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.

These testimonies highlighted how far we still need to go.

🟡 Inclusive Language & Representation
There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.

🟢 The Work Ahead
Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.

A Forum of Global Carers, Local Action

This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.

One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.

Want to Get Involved?

The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.

For bookings or questions, contact me at info@caringmindblog.com
📱 Or download and scan the QR code in the flyer above

Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.

Next National MH carer forum in August 29th 10:30 am
Matthew McKenzie
Founder – Caring Mind Blog
Facilitator – National Ethnic Mental Health Carer Forum

Triangle of Care Community Meeting: July 2025 update

On 21st of July 2025, carers, professionals, and stakeholders from across the UK gathered virtually for the latest Triangle of Care (ToC) Community Meeting. Chaired by Matthew McKenzie, this session was packed with insight, action points, and open dialogue. Whether you were new to the group or a long-time contributor, there was something valuable for everyone.

This meeting was particularly significant as it marked a turning point for carer participation. The formal recognition of the community group in ToC’s national governance structure. It affirmed that carer lived experience should not be sidelined, and that carers must continue to shape mental health services from the inside out.

If you weren’t able to attend, this blog will bring you up to speed. As the ToC community group covered a wide range of topics, from updates on national strategy and governance, to inclusive language, carer-led training, and advocacy for better research funding. At the heart of it all was a single message: when carers unite, systems must listen.

Official Recognition and Governance Progress

We are delighted to announce that the Triangle of Care Community Group is now formally integrated into the Triangle of Care governance structure. This gives the group a direct route to influence national decisions. The community will now sit alongside steering and regional groups in shaping policy, reviewing practices, and helping determine what carer inclusion should look like across all participating trusts.

What this means practically is improved alignment and visibility. For years, many carers and grassroots contributors have worked tirelessly behind the scenes, often without formal platforms. This change allows community voices to be heard before decisions are made not just consulted afterwards. Matthew described this shift as “a recognition of the years of unpaid care, leadership, and advocacy carers have always provided.”

It also means that our meetings will align with national timelines and decisions, ensuring a timely flow of updates between local groups, regional networks, and national forums. This is a pivotal opportunity to embed carers more meaningfully into NHS structures and accountability.

New Mailing List & Sign-Up System

Mary Patel from Carers Trust announced the launch of a new centralised mailing list for Triangle of Care community members. This will make sure everyone receives meeting invites, resources, and updates reliably. Participants will soon be asked to complete a Microsoft sign-up form, which will securely transfer contact details onto the Carers Trust system for ongoing communications.

The form will include a few demographic questions to help build a picture of the diversity within the ToC community. These questions are entirely optional but are designed to help Carers Trust identify who is engaging, and where gaps might exist—ensuring outreach strategies reflect real needs. For example, better regional balance, or increased visibility for underrepresented carer groups.

There was also discussion about moving from Zoom to Microsoft Teams for future meetings. Teams offers benefits like attendance tracking, secure file sharing, and easier scheduling. However, this won’t be a forced change, Matthew and Mary invited feedback, emphasising that any transition would be made collaboratively with community input.

Stronger Carer Involvement

Carer involvement was at the heart of the meeting. Matthew shared a passionate update on the need for carers particularly those from minority backgrounds or marginalised communities to step forward and engage in all aspects of the Triangle of Care. This includes involvement in peer reviews, shaping surveys, and suggesting new training or webinar content that reflects their lived experience.

The community was reminded that leading change doesn’t require a title or formal position. Sharing your story, participating in surveys, or simply raising your hand during a meeting is a form of leadership. Matthew emphasised that carers hold the kind of insight that no policy or textbook can replicate. As he put it, “This community is only as strong as the carers who show up.”

Peer reviewing was especially encouraged. Carers can play a vital role in reviewing mental health trust practices and making sure those trusts aren’t just ticking boxes but are genuinely improving the carer experience. Anyone interested in joining these review panels was invited to contact Mary Patel directly. The experience is meaningful and empowering and it places carers right where they should be: in positions of influence.

CQC Expectations and Carer Experiences

A powerful part of the meeting focused on the role of the Care Quality Commission (CQC) and how effectively it monitors carer inclusion in mental health services. Several carers and professionals shared their experiences some positive, others deeply concerning about how the CQC engages (or fails to engage) with carers during inspections.

A senior experience lead from an acute trust, explained that when CQC inspectors review services, they typically look for a clear carers policy, systems for identifying and supporting carers, and evidence of staff training. However, the level of scrutiny and the quality of carer-related feedback can vary significantly between inspections. The experience lead noted that while policy is important, it’s the systems around those policies that really matter, things like whether staff actually follow them, and whether carers know where to go for help.

Carers in the meeting shared contrasting experiences. A carer described a disappointing CQC visit where the inspector seemed dismissive, rushed, and uninformed about carers’ rights. Her feedback about lack of communication and exclusion was barely acknowledged, leaving her feeling invalidated. In contrast, Another carer spoke of a more recent inspection where the CQC officer seemed empathetic, asked thoughtful questions, and even disclosed their own possible caring experience. These differing accounts highlighted a common theme: carers’ confidence in the CQC is mixed, and their approach to carers can sometimes feel inconsistent.

There was strong consensus that CQC needs better training in carer engagement and not just understanding legal frameworks like the Care Act 2014, but also how to meaningfully include carers in service reviews. Kelvin added that cultural competence should also be part of the equation, noting that carers from minority backgrounds are too often left out of consultations. Matthew urged carers not to wait for trusts to invite them to speak during inspections ask to be involved, request to meet inspectors, and use carers’ councils or governors to raise visibility. It was clear from this session that carers want the CQC to be more than a compliance body, they want it to be a true advocate for accountability and equity in care.

Confidentiality Roadshow by Donna Bradford

A standout session was led by Donna Bradford, who presented her team’s work on the Confidentiality Roadshow a training programme developed by Lincolnshire Partnership NHS Foundation Trust. Designed to upskill staff on consent, confidentiality, and communication, the roadshow is tailored around carer inclusion and co-produced with the Carers Council.

The training helps staff understand not only what they can share legally, but also how to navigate nuanced emotional and ethical situations with carers. Donna reminded attendees that sharing basic, non-confidential information, such as medication side effects, is not only lawful but essential. “If you can Google it, you can say it,” she noted, driving home the importance of clarity over confusion.

Over 550 staff have already received the training, with 100% reporting that it improved their confidence. The programme includes real-life carer scenarios, emotional video testimonials, and interactive quizzes to help reinforce learning.

Beyond the training content itself, what makes the Confidentiality Roadshow so impactful is its co-production with carers. Donna highlighted that every scenario used in the sessions came from real-life examples shared by carers and families. This ensures the training isn’t theoretical so it’s grounded in lived experience. The emotional and practical realities of caring for someone with mental health needs are at the heart of the learning, helping staff understand why clear, compassionate communication is so essential. The training also underscores the importance of listening to carers, not just as bystanders but as active contributors to a person’s care journey.

Several attendees raised the idea of incorporating this training into broader staff induction and continuing professional development programmes. Others asked about adapting it for use in different trust settings, such as acute hospitals or community services. Donna encouraged trusts to reach out if they’d like to adopt or customise the resource. The message was clear: confidentiality shouldn’t be a barrier, it should be a bridge, and with the right training and tools, staff can navigate those conversations with confidence, legality, and humanity.

Mental Health Research Petition

Irene Harris spoke passionately about a new parliamentary petition calling for improved research funding into serious mental illnesses (SMIs) like psychosis. The petition aims to shine a spotlight on how outdated treatments and under-researched conditions continue to place carers and their loved ones in difficult, often heartbreaking positions.

Here is the video about Psychosis medication and its impact by the Stockport carers forum.

She shared how mental health medications for SMIs haven’t evolved as rapidly as physical health treatments, and how this results in long-term side effects and compromised quality of life. Research is desperately needed, not only to improve diagnosis and treatment, but also to create support structures that ease the burden on unpaid carers.

Irene asked attendees to sign and circulate the petition widely, with a goal of hitting 10,000 signatures by November 15th.

https://petition.parliament.uk/petitions/725846

She also announced plans to launch new social media channels to raise awareness. This initiative is about more than funding it’s about giving carers and service users a louder voice in national healthcare priorities.

For more details feel free to visit https://www.mhcarersgroupstockport.co.uk

or contact Irene on irene@mhcarersgroupstockport.co.uk

Language, Inclusivity, PCREF & the ‘Global Majority’ Debate

Language and inclusivity were major themes of the meeting, particularly around the term “global majority.” Some attendees expressed concern that the phrase could be divisive or misinterpreted, particularly by politically sensitive audiences or media outlets. A carer shared a personal anecdote illustrating how words can carry unintended consequences.

Others responded by highlighting the intention behind the term to emphasise that those historically described as “minorities” are, in fact, the global majority in population terms. They called for continued use of the phrase in contexts that promote empowerment, equity, and lived experience.

The discussion didn’t produce a consensus, but it modelled what respectful disagreement and co-learning should look like. Matthew reinforced that ToC should be a space for constructive dialogue, not debate for its own sake. Ultimately, we are united in our aim to ensure no carer is left behind regardless of background, heritage, or identity.

Next Steps & Community Actions

The session wrapped up with a summary of action points and responsibilities. Carers Trust will soon circulate the new mailing list sign-up form. Matthew will share updated meeting dates for 2026 once confirmed, and he will continue to distribute posters for the upcoming National Ethnic Carers Group, taking place on the last Friday of each month.

There will be support the rollout of the Confidentiality Roadshow materials and follow up with those interested in joining peer review panels. A reminder was issued for everyone to contribute to current surveys, share their feedback, and suggest future topics for community meetings.

Finally, participants were encouraged to stay connected beyond the meetings. Whether through peer networks, local carers centres, or email updates, the message was clear: carers must stay visible, vocal, and valued. You are the change-makers, and this group is your platform.

Final Thoughts: “Carers Are Not Just a Cog in the Wheel”

Matthew ended the session with a rallying call to action: “We’re not just a cog in the wheel as we are the energy behind it.” His words served as a reminder that carers are not passive recipients of services. They are drivers of quality, advocates for change, and protectors of dignity in the mental health system.

He also reminded everyone that systems often change slowly, but they do change when people keep showing up, keep speaking up, and keep sharing their truths. “This isn’t just about the Triangle of Care,” he said. “It’s about reshaping the whole narrative around mental health and care.”

If you missed the meeting and would like to receive the slides, recordings, or further resources, feel free to contact Matthew McKenzie directly:
📧 mmckenzie@carers.org

Thanks to to all who attended, contributed, and championed carers’ voices. The next meeting should in September where we hope to see you there.

Lewisham, Southwark & Lambeth Mental Health carer forum – June 2025 update

About the Forum:
The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.

Carers Week Collaboration Discussion

The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.

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Ethnic mental health Carer Forum Update June 2025

By Matthew McKenzie – Carer activist, poet and author

Welcome to a brief update of my ethnic mental health carer group, held monthly.

The meeting began with introductions and technical discussions on connecting to zoom, followed by presentations on research related to mental health care and carer support, particularly focusing on minority communities and paranoia. The group discussed various initiatives including a community intervention study, a carer experience questionnaire, and progress updates on Patient Carer Race Equality Framework reporting across different NHS regions. The conversation ended with discussions on challenges faced by minority carers, including access to mental health services and the need for better support systems, with calls for national collaboration and improved respite services.

Summary

Carer Support Network Expansion Discussion

The meeting began with Matthew introducing the session and addressing technical issues faced by some participants, including a participants video problems, which were resolved. Matthew explained his recent laptop issues and mentioned his involvement with Carers Trust regarding Triangle of Care. The group discussed the expansion of their focus with minority carers and the importance of connecting and networking across the UK. Juliana, a researcher, provided an overview of her work, and participants introduced themselves, sharing their roles and experiences related to mental health care and carer support. The conversation ended with a brief overview of upcoming presentations and discussions.

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Cygnet National Carers Event – Carers Week 2025

By Matthew McKenzie, Carer Ambassador, Cygnet Health Care

On Friday 13th June 2025, I had the privilege of attending and speaking at Cygnet Health Care’s National Carers Event, hosted at Cygnet Churchill in Lambeth, London. The event brought together carers, staff, professionals, and advocates to reflect on the vital role of unpaid carers who step up daily out of love, resilience, and responsibility, often with little recognition.

Carers Week is always a powerful reminder that caring touches us all – and Cygnet’s event this year was especially moving and informative. It offered a platform for carers to share their lived experience, influence policy, and strengthen our collective voice.

Agenda Highlights

The day opened with a warm welcome from Laura Sheridan & Shane Mills, setting the tone for a day grounded in empathy and collaboration. We heard from a range of speakers including:

Susan Hartnell-Beavis, sharing practical tools for supporting carers.
Kate Mercer and Carly Ellicott, who both championed carer involvement in care planning and research.
John Bangs OBE, who brought a national perspective on carer rights and policy.
Dr Angela Misra, who tackled the health implications of caregiving.
Julian de Takats and Matthew McKenzie (myself), focusing on empowering carers’ voices.
We also had insights from Dr Henk Swanepoel & Sophie Borg, who presented on collaborative approaches with carers in mental health services.

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