Tag Archives: carer engagement

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

  1. National survey gathering research questions.
  2. Analysis to identify common themes.
  3. Second, more focused survey to refine priorities.
  4. 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.

Lewisham, Southwark & Lambeth carer forum update October 2025

The recent Carers Forum brought together unpaid carers, health professionals, and community organisations from across South London to share updates, experiences, and ideas for improving mental health support. The event, chaired by Matthew McKenzie, created a safe and open space for carers to connect, exchange information, and have their questions heard by local health leaders.

Setting the Scene

Matthew opened the session by welcoming carers from across Lambeth, Lewisham, and Southwark. He spoke about the importance of providing carers with dedicated time to hear from service providers, particularly those supporting someone with mental ill-health and to ensure their voices shape local mental health strategies.

Continue reading →

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.

Hospital Carers Discharge Meeting Update July 2025

Posted: July 2025
By: Matthew McKenzie

In July 2025, we held another meeting of the London Hospital Discharge Carers Forum, which brings together carer centres, NHS professionals, and lived experienced unpaid carers to explore how we can better support unpaid carers through the complex hospital discharge journey.

With key developments shared, questions raised, and future opportunities on the table, I’m sharing this blog to ensure everyone is informed.

A Focus on Hospital Discharge but With Carers at the Centre

The forum continues to highlight how vital carer centres are in delivering effective, compassionate discharge support. But alongside that recognition comes rising expectations: better digital access, stronger links with acute hospital teams, more formal involvement in care planning, and even new digital tools to manage carer identity and input.

Our role is growing and so is the need for collective visibility and coordinated action.

Key Themes from July’s Discussion

1. NHS England Hospital Discharge Toolkit & Care Contingency Plan
As an involved carer, I delivered the NHS England update. The main message? The Care Contingency Plan (CCP) is becoming a key focus across the system. There are planning sessions due in September, and carer centres might be asked whether they can take on CCP delivery alongside existing carers assessments.

This triggered a crucial question: Will additional funding or contractual support be offered to carer centres taking on CCPs? because we can’t afford to quietly absorb additional workload without clarity on resources or expectations.

2. Digital Tools – NHS App & Carer Self-Identification
With the growing digitisation of NHS services, there are plans to enable carers to self-identify via a digital route. The Universal Care Plan (UCP) is being built into the NHS app, but there’s confusion about whether a separate “carer app” is being developed too.

We’ve asked NHS England for clarification: Will carers be expected to use one NHS app to manage both contingency plans and carer registration, or will multiple systems be introduced? The answer will have implications for how we support carers with digital skills and accessibility.

3. The Bigger Picture – NHS 10-Year Plan and Local Adaptation
We explored how the new 10-Year NHS Plan mentions carers primarily in the context of discharge, but offers little in terms of direct support or investment in carers themselves. Several carer centres raised concerns about being seen only as a means to improve discharge outcomes, rather than as partners in their own right.

That said, some centres are using the plan as an opportunity, working with local Integrated Care Boards (ICBs) to adapt and influence how the priorities are rolled out locally, including integration with neighbourhood health centres and walk-in clinics.

Peer Learning and Local Centre Updates

As always, our meeting included practical insights from carer centres embedded in local hospitals. Topics included:

  • Establishing hospital-based carer hubs and information desks.
  • Hosting monthly drop-ins for carers on specific wards (e.g. stroke and frailty).
  • Using ward rounds to identify and build relationships with staff willing to act as carer champions.
  • Overcoming challenges in gaining visibility, sustaining presence, or maintaining resource levels for in-hospital work.
  • Planning carers coffee mornings and pop-up stands to increase footfall and engagement.

For newer hospital-based carer workers, this space proved invaluable as a place to learn from colleagues, gather ideas, and avoid isolation.

Project Developments: What Centres Need to Know

Several borough-wide and London-wide initiatives are taking shape that could directly affect how carer centres operate in coming months:

  • A standard operating procedure for hospital discharge, currently being developed across South East London, is aiming to streamline how carers are engaged at discharge, with pilot sites starting this September.
  • In North Central London, work is underway on a web portal that makes it easier for hospital and emergency staff to refer carers into local support services including from the London Ambulance Service.
  • Carer Centres in several areas are starting or refreshing carer charters, carer passports, and surveys designed to codify carer involvement and measure experience across hospital pathways.
  • Carer support workers at one major South London hospital are re-establishing visibility post-staff transition. Efforts are underway to build new ward-level relationships and identify carer champions among staff. The centre is also exploring monthly carer drop-ins, asking the group for ideas on what works well and what doesn’t.
  • One East London carer centre has established a hospital-based hub on a specific ward floor, acting as a go-to space for carers needing support or information. They also run monthly drop-in sessions on elderly/frailty and stroke wards conditions where family involvement in discharge planning is often critical.

These projects are at different stages, but all point to one thing: carer centres are being asked to operate more visibly, more formally, and more digitally. It’s essential we shape this process and not just respond to it.

With NHS England’s CCP work moving fast and carer integration into digital systems ramping up, carer centres can no longer afford to remain on the sidelines.

  • We have a chance to be informed of policy changes early not after implementation.
  • Carer centres and hospitals can raise concerns about workload, training, and funding before it’s too late.
  • Newer or isolated workers benefit from collective knowledge-sharing and support.

This is not just another meeting, it’s one of the few cross-borough forums focused squarely on carer centres in the acute hospital context.

Looking Ahead: September Session

Our next meeting will be held usually the last week of September.

Let’s not let carers be an afterthought. Let’s make sure carer centres are seen, heard, and properly resourced.

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.

NHS Digital Revolution: Empowering Unpaid Carers

The Digital Revolution in the NHS: Why Unpaid Carers Must Be at the Heart of Change

From Matthew McKenzie – Carer activist

Below is a transcript of my video

The National Health Service (NHS) in the UK is undergoing a profound transformation, one that is being described as a technological revolution. With the launch of the NHS 10-year plan, the focus is shifting towards digitization, artificial intelligence, and centralized health information. While these changes promise to streamline care and improve outcomes, there is a critical group whose needs and voices must not be overlooked: unpaid carers.

Unpaid carers which I feel are often family members or close friends often play a vital role in supporting those with long-term health conditions, including mental illness and cancer. Their contributions are immense, yet they are frequently left on the sidelines when it comes to digital innovation in healthcare. This article explores why unpaid carers must be central to the NHS’s digital future, the challenges they face, and the steps needed to ensure they are empowered, included, and supported.

Understanding the Role of Unpaid Carers

The Backbone of Community Care

Unpaid carers are the unsung heroes of the healthcare system. They manage medications, coordinate appointments, provide emotional support, and often handle emergencies. Their work extends far beyond what is visible to the public or even to healthcare professionals. When patients leave hospitals or clinics, it is usually unpaid carers who take on the responsibility of ongoing care at home.

The Double Burden

Caring for someone with long-term illness can be demanding, both physically and emotionally. Many carers juggle multiple roles, often putting their own needs last. The demands of caring can make it difficult to keep up with new technologies or to seek out digital tools that could make their role easier. This invisibility and self-sacrifice can lead to carers being left behind as the NHS moves forward with its digital agenda.

The NHS 10-Year Plan and the Digital Revolution

What’s Changing in the NHS?

The NHS 10-year plan marks a significant shift towards digital healthcare. Key elements include:

  • Expansion of the NHS App: The NHS app is being developed to allow for easier booking of appointments, prescription management, and access to centralized health information.
  • Integration of Artificial Intelligence: AI will be used to process the growing volume of health data, supporting healthcare workers in making faster, smarter decisions.
  • Digital Health Records: Patient records will be digitized and made accessible across services, ensuring continuity of care and reducing the need for patients and carers to repeat their stories to every professional.

The Promise of Technology

Digitization offers many potential benefits for carers. With the right support, technology can:

  • Reduce waiting times and streamline appointment bookings.
  • Provide real-time access to health information and test results.
  • Eliminate the need to repeatedly explain a patient’s history to different professionals.
  • Help carers stay organized and informed, improving the quality of care they provide.

The Risks of Exclusion

Barriers to Digital Inclusion

Despite the promise of technology, there are significant barriers that can prevent unpaid carers from benefiting:

  • Digital Literacy: Not all carers are comfortable with technology, and some may lack the skills or confidence to use digital tools effectively.
  • Access to Devices: Smartphones and other devices capable of running advanced health apps can be expensive, putting them out of reach for many carers who may already be financially stretched.
  • Design Oversights: Many digital health tools are not designed with carers in mind, focusing instead on patients or healthcare professionals.
  • Time Constraints: The demands of caring leave little time for carers to research or learn about new digital resources.

The Danger of Being Left Behind

If unpaid carers are not included in the digital transformation, there is a real risk that they will be excluded from important aspects of care planning and decision-making. This could lead to poorer outcomes for both carers and those they support, and ultimately place greater strain on the NHS as a whole.

Making Digital Healthcare Work for Carers

The Need for Training and Support

To ensure carers can benefit from digital innovations, targeted training and support are essential. This could include:

  • Workshops and Training Sessions: Carer centers and NHS trusts can offer training on how to use digital tools, such as the NHS app.
  • Recovery Colleges: In the mental health sector, recovery colleges can help upskill carers in using technology to support their loved ones.
  • Accessible Design: Digital tools should be designed with carers in mind, ensuring they are intuitive and easy to use.

Inclusion in Care Records and Decision-Making

Carers must be recognized and included in digital care records, with appropriate safeguards for confidentiality. This would allow them to:

  • Be easily identified and referred to support services.
  • Access relevant health information to better support the person they care for.
  • Participate in care planning and decision-making processes.

Co-Designing Digital Tools

Carers should have a say in the design and rollout of digital health tools. Their lived experience provides invaluable insights into what works and what doesn’t. Involving carers from the outset can ensure that digital innovations truly meet their needs.

Practical Steps for Carers

Engaging with the NHS App

Carers should be encouraged to explore the NHS app and see how it can support them in their role. This might include:

  • Booking appointments for the person they care for.
  • Managing prescriptions and medication reminders.
  • Accessing up-to-date health information and test results.

Seeking Support and Sharing Feedback

Carers should not hesitate to ask their GP, pharmacist, or local carer organizations about digital options and support. Providing feedback on what works and what doesn’t is crucial for improving digital services.

Building a Community of Support

Carer groups and forums can play a vital role in sharing experiences, tips, and support related to digital healthcare. By working together, carers can help each other navigate the digital landscape and advocate for their needs.

The NHS’s Responsibility: Including Carers in the Digital Future

Recognizing Carers as Partners, Not Visitors

Unpaid carers are not just visitors in the healthcare system as they are integral to its functioning. Their inclusion in the digital revolution is not optional; it is essential for the sustainability of the NHS.

Reducing Pressure on the System

By supporting carers with digital tools and resources, the NHS can help them provide better care, reducing the pressure on hospitals and social care services. Excluding carers would only shift the burden back onto the NHS, undermining the goals of the 10-year plan.

Building Digital Solutions with People at the Center

Technology alone cannot solve the challenges of healthcare. Digital solutions must be built with the people who use them patients, carers, and professionals at the center. This means ongoing dialogue, co-design, and a commitment to accessibility and inclusion.

Looking Ahead: Embracing Change Together

The Constant of Change

Technology is always evolving, bringing both challenges and opportunities. For carers, staying informed and engaged with digital developments is key to ensuring they are not left behind.

Shaping the Future

Carers have a unique opportunity to shape the future of healthcare. By participating in the digital revolution, sharing their experiences, and advocating for their needs, they can help create a system that works for everyone.

A Call to Action

Whether you are a carer, a healthcare professional, or someone interested in the future of the NHS, now is the time to act. Embrace digital tools, seek out training and support, and make your voice heard. Together, we can ensure that the NHS’s digital future is inclusive, effective, and centered on the needs of those who care.

Conclusion

The NHS’s digital revolution holds great promise, but its success depends on the inclusion of unpaid carers. By recognizing their vital role, addressing barriers to digital access, and involving them in the design and implementation of new tools, we can build a healthcare system that is truly fit for the future. Unpaid carers are not just supporting the system they are shaping it. Their voices, experiences, and needs must be at the heart of the NHS’s digital journey.

National Triangle of Care Community meeting – March 2025

By Triangle of Care community chair Matthew McKenzie FRSA BEM

For the month of March, unpaid carers, NHS professionals, and key stakeholders came together for another Triangle of Care National Community Meeting, which is a powerful space of collaboration, reflection, and shared purpose. Chaired by Matthew, the meeting spotlighted significant developments in carer engagement, mental health service standards, and equity frameworks across the NHS.

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National Triangle of Care community meeting – January 2025

Welcome back to a brief update of the National Triangle of Care Commnity Group. A meeting organised by myself as a carer of lived experience to give a chance for mental health carers to find out developments on Triangle of Care. The online group is attended by unpaid mental health carers, Carers Trust triangle of Care leads and NHS carer representatives and mental health staff.

Agenda of Meeting

The meeting focused on discussing the Triangle of Care program, gathering feedback from carers, and addressing challenges in mental health care. Attendees shared experiences and insights on carer involvement, communication issues, and the need for improved support systems. Key topics included progress updates on the Triangle of Care implementation, the importance of carer perspectives in healthcare decision-making, and strategies to enhance carer engagement and representation across diverse groups.


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Empowering Caregivers: Engaging with Integrated Care Systems

Another blog post by carer activist Matthew Mckenzie on how caregivers can engage with Integrated Care Systems to ensure their voices are heard and needs are met. A way to discover the power of feedback in improving local Health Services.

To watch the video version of my blog, click below

Integrated Care Systems (ICS) have been shaping the landscape of healthcare in the UK for several years now. These ICSs are designed to ensure that health services meet the unique needs of local communities, ICSs are evolving frameworks within the National Health Service (NHS). They aim to promote a more collaborative approach to healthcare by engaging with everyone involved in the health service delivery—including professionals, patients, and carers….yes, thats right! Unpaid carers, but how can unpaid carers get their voice heard?

Well if you are caring for someone unpaid with a long term illness, then understanding how these systems work is crucial for anyone reliant on or working within the NHS. This article delves into what ICSs are, their importance, and how carers can make their voices heard within these systems.

What is an Integrated Care System?

As noted in my video. An Integrated Care System (ICS) is essentially a model used within the UK’s NHS to better structure how health services are commissioned and provided. Before ICSs were implemented, health services were commissioned in a somewhat isolated manner, which often didn’t fully account for the comprehensive needs of the community. There were other reasons for the change to ICS, but that would be for another blog post.

The Need for Engagement

At the heart of an ICS is the concept of engagement. For an ICS to be effective, it must listen to the very people who use and provide the health services. This involves unpaid or informal carers, patients, and other healthcare providers all collaborating to ensure that the healthcare services are as effective and efficient as possible

The Role of Commissioning

Commissioning still plays a central role within ICSs. Commissioners work to ensure that the right health services are provided, but their decisions must be informed by feedback from carers as well. This is where the role of carers becomes critical. By participating in the engagement process, carers can help shape the nature and delivery of healthcare services to better meet their needs as well as those of the patients. Carers should have a seat at the table.

Local Healthwatch

One of the most effective ways to engage with an ICS is through your local Healthwatch. Healthwatch organizations are pivotal stakeholders within ICSs. They gather insights from patients, carers, and the general public to inform health service delivery.

  • Find Your Local Healthwatch: Simply type “Healthwatch” and your local area (e.g., Healthwatch Kent, Healthwatch Lambeth) into a search engine. This will provide you with details on meetings, agendas, and how to participate.
  • Attend Meetings: When possible, attend local Healthwatch meetings to stay informed and voice your concerns.
  • Provide Feedback: Whether through surveys, forums, or direct communication, your feedback is invaluable.

Speaking Up

Even if you can’t make it to meetings, there are other ways to ensure your carer voice is heard. It could be as simple as sending an email or filling out a survey provided by your local Healthwatch.

  • Importance of Feedback: Your insights are gold in terms of showing what works and what doesn’t within the current healthcare framework. Sharing your story—whether it’s good, bad, or ugly—can spotlight gaps and prompt necessary changes.

Advocating for Transparency

As mentioned in my video, one crucial area carers should focus on is advocating for transparency in the ICS decision-making process. Are carers and caregivers’ experiences included when tailoring health services?

  • Be Specific: When you provide feedback or attend meetings, be specific about what issues need addressing. Whether it’s concerning mental health services or care for chronic conditions, specificity helps stakeholders understand and prioritize your needs.
  • Persistent Engagement: Continuously engage with the system. Don’t just provide feedback once and assume your role is done. Keep track of the outcomes and ask for updates.

Building Alliances

Another vital strategy for making an impact in an ICS is building alliances. Networking with other carers, healthcare providers, and advocacy groups can amplify your voice.

Learn From Others

Engage with other carers and learn from their experiences. Information sharing can be incredibly powerful.

  • Caregiver Forums: Joining caregiver forums can be a great way to share information and strategies. These platforms often have tips on how to engage effectively with healthcare providers.
  • Collaborative Effort: Remember, you don’t have to do it all alone. Partnering with others in similar situations can be a massive force for change.

Continuous Learning

Attending meetings and reading through reports can seem daunting, but they offer a wealth of information. One thing noted about ICSs is the amount of reports. Those reports should be held to account regarding jargon, although being relistic, there is no quick escape from Jargon.

  • Stay Informed: Regularly check for any updates or meetings concerning your ICS.
  • Form Networks: Building a network of support can be incredibly beneficial. It not only alleviates the feeling of isolation but also helps in sharing the workload of participation.

The Importance of Carer Input

ICSs are designed to be collaborative, ensuring that health services are well-rounded and holistic. However, this is only possible if carers, who are often the hidden backbone of healthcare provision, speak up and engage.

Carers As a Link

Carers are the crucial link between the healthcare system and the person being cared for. Without their input, ICSs may second guess the needs of the community, leading to services that do not fully meet those needs.

Avoiding Isolation

One of the worst outcomes for any carer is isolation. Engaging with ICSs not only helps improve healthcare services but also connects carers with a supportive network of individuals who hopefully can understand their struggles.

The Bigger Picture

Beyond the immediate benefits, carer input helps create a more responsive and effective healthcare system. This leads to better outcomes for everyone involved, from the patients to the healthcare providers. Caring for someone should not always remain an isolating experience. As a carer use your experiences to ask for better support from the healthcare system.

In Summary

Integrated Care Systems represent a significant step towards more inclusive and comprehensive healthcare in the UK. They aim to mesh the various elements of health service provision into a coherent whole that genuinely meets the needs of the community. Carers have an indispensable role in making this vision a reality.

By engaging with local Healthwatch, providing persistent and specific feedback, advocating for transparency, building alliances, and staying continuously informed, carers can significantly influence the effectiveness of these healthcare systems. Remember, as a carer, your insights are invaluable.

So, don’t be silent. Speak up, engage, and help improve local health services today. Together, we can achieve more adaptive and efficient healthcare systems that better serve everyone.