On Thursday 20th November, I had the privilege of attending and speaking at the Memory, Wellbeing and Brain Health event hosted at Broadfield Community Centre in Crawley. Organised by Carers Support West Sussex, the event formed part of Carers Rights Day, bringing together carers, professionals, community teams, and people living with dementia for a day of learning, connection, and support.
Although I couldn’t stay for the full programme due to travelling to another Carers Rights Day engagement later that afternoon, I was grateful to take part in the early sessions and witness the energy and compassion that shaped the whole day.
In a recent interview, Matthew McKenzie sat down with Hannah Codigan, a palliative care nurse who brings a unique perspective to healthcare, not only as a professional but also as someone with lived experience of serious mental illness. Together, they explored the importance of recognising unpaid carers and embedding lived experience voices in the design and delivery of healthcare services.
Caring Beyond the Patient
Hannah shared how her role in hospice care extends beyond patients to include families and carers who often struggle without recognition. She emphasised that carers need as much emotional and practical support as the people they care for, noting how time pressures in nursing can make it difficult to truly listen to their experiences.
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.
By Matthew McKenzie – Facilitator of National ethnic mental health carer forum & Triangle of Care – Community group
The National Ethnic mental health Carers Forum (chaired by myself) met for September bringing together various stakeholders, including carers, healthcare professionals, and community representatives, to address issues related to race, equity, and care services. Key discussions included technical setups, addressing ongoing challenges in healthcare for marginalized communities, and emphasizing the importance of incorporating diverse perspectives in developing solutions for better patient experiences.
The importance of data collection, representation, and systemic change catalyzed by community engagement were recurring themes. Presenters highlighted various initiatives, including the Patient Carers Race Equality Framework (PCREF), aimed at improving services for ethnic minority populations. Questions from attendees focused on ensuring inclusivity and effective communication within the healthcare framework.
Improving Ethnic Minority Healthcare Access
The meeting introduced participants to the Patient Carer Race Equality Framework (PCREF) initiative, focusing on improving outcomes for patients and carers from ethnic minority backgrounds.
Wayne Farah, an associate at the Institute of Race Relations, presented resources available to support understanding and addressing racism in healthcare, including statistics, healthcare access issues, and practical resources for carers.
Wayne Farrar opened his talk by drawing on both professional expertise and personal experience. He explained the history of the IRR, its focus on amplifying marginalised voices, and the resources it provides such as IRR News and the Calendar of Racism and Resistance. His main theme was the persistence of institutional racism in the NHS and wider systems, which he linked to the legacy of “race science.” He argued that current approaches, like dashboards, metrics, and inquiries, often mask the real problem by treating health inequalities as technical or biological issues rather than outcomes of racism and discrimination.
Wayne used examples such as the Windrush scandal to show how bureaucracy allows injustice to persist, describing this as the “banality of evil.” He also shared personal stories about advocating for his wife in the healthcare system, emphasising that carers need to be strong and assertive because no one cares more about their loved ones than they do. He concluded with reflections on resilience, including how he has reframed being stereotyped as an “angry Black man” into a form of empowerment to push harder for change.
The discussion that followed showed how deeply Wayne’s talk resonated. Carers praised the presentation’s directness and asked if Wayne had worked with PCREF (Patient Carer Race Equality Framework). Wayne said he had some involvement through the NHS Confederation and noted that PCREF could more strongly address issues like “racecraft.” Len raised a challenge about Wayne’s framing of race as a social construct, pointing out that racism feels very real to victims. Wayne clarified that he meant race has no biological basis in medicine, but racism is a social process with very real consequences. Another carer shared her experience of being stereotyped by NHS staff about her risk of diabetes despite not following the assumed “Asian diet,” saying Wayne’s points about race-based assumptions resonated strongly with her. Another carer also reflected on how stereotyping affects healthcare, while other participants spoke of how powerful and validating Wayne’s talk had been.
Overall, Wayne’s session combined history, critique of systemic racism, and practical advice for carers. The Q&A highlighted both curiosity about frameworks like PCREF and the need to address the tension between race as a social construct and racism as lived reality. Many participants expressed gratitude, saying the presentation was direct, powerful, and reflected their own experiences of stereotyping and inequality in healthcare.
Carer Questions: A carer challenged Wayne’s statement that race is a social construct, saying that while it may not be biological, racism is very real for victims and has a lived history.
Wayne’s Response: He clarified that he meant race has no biological or scientific basis in medicine or anthropology, but racism is very real as a social process. He emphasised that health disparities (like hypertension in Black communities or diabetes in South Asians) are not caused by race itself, but by racism, discrimination, and lack of access to appropriate services. He wanted participants to be cautious when institutions frame disparities as inherent to race rather than outcomes of racism.
Matthew’s Question (Forum Lead): I asked what role the Royal College of Psychiatry should play in countering race science, given its influence over professionals and carers.
Wayne’s Response: He said that was the aim of PCREF, but royal colleges were historically rooted in race science, which is why good intentions are not enough. He criticised the frequent use of “inquiries” into deaths of Black men in mental health care as ways of delaying real change. He argued that systemic neglect persists, and professional bodies must take responsibility rather than congratulate themselves for minor improvements.
Addressing Racism in Healthcare Systems – Norfolk and Suffolk NHS Foundation Trust
As usual Mental Health trust representatives including involved carers update the national ethnic carer forum on developments.
Cath explained that race equity is now a strategic priority for NSFT, which serves a largely rural and non-ethnically diverse population where explicit racism is still present in communities and services. Under the leadership of their Chief Executive, the trust has set out a clear strategy built on improving health, care, culture, and value. To deliver this, NSFT has launched 12 large-scale change programmes, one of which previously focused broadly on inclusion but has now been reframed specifically around race equity. Importantly, this work is being split equally between workforce development and PCREF, so that both staff experiences and service-user outcomes are addressed.
She acknowledged that NSFT is still behind other trusts in terms of PCREF implementation. Their original PCREF plan, approved in spring, has already been recognised as inadequate and is now under review. Cath noted that this review will lead to a more outcomes-focused approach rather than process-driven work. A dedicated health equity and PCREF team is also being created as part of the trust’s corporate redesign, reflecting a recognition that they lacked capacity and expertise in this area. The revised plan is due to go through governance for approval in November.
Annie, speaking as a carer representative, highlighted how important it is to be “at the table rather than on the menu.” She acknowledged she can be seen as “aggressive” or “demanding,” but stressed that Cath had helped give her the confidence to challenge constructively at board level. Annie linked IRR advice about building relationships with senior managers to her own experience, saying that having a place at decision-making tables empowers carers to make sure the realities faced by ethnic communities are heard. She also reflected on her personal motivation: as the mother of a mixed-heritage son, she feels a responsibility to speak up on what ethnic families experience in practice.
PCREF Implementation and Progress Update – north london nhs foundation trust
The next NHS trust to present to my forum was North London NHS FT, which covers 5 London boroughs due to the merger of 2 large NHS mental health trusts.
Samina Arfan, Associate Director for Equality, Diversity and Inclusion at North London Foundation Trust (NLFT), explained that her trust was created from the merger of Camden & Islington and Barnet, Enfield & Haringey trusts. Unlike some early PCREF pilot sites, NLFT only began its PCREF journey in late 2023. The first step was setting up governance structures, securing an executive lead at board level, and creating an EDI programme board. Alongside her colleague, Jordel Akinola, she led engagement events in local boroughs to ensure strong co-production with communities. These early steps gave the trust a foundation to begin shaping its PCREF plan
A major priority has been addressing inequalities in mental health detention and restraint practices. Samina shared data showing Black communities are disproportionately detained under section 2 of the Mental Health Act, while Asian people are underrepresented. Restrictive practice data revealed that Black men were more likely to experience prone restraint, which prompted a quality improvement project across wards. This included improving the accuracy of ethnicity recording, since too many patient records lacked this information. Workforce diversity was highlighted as well—NLFT has a diverse staff, but the data still shows ethnic disparities in care outcomes, making it vital to view restraint and detention through a racism lens
She also described broader initiatives: building a PCREF dashboard to apply a race lens to existing NHS targets; launching co-production projects with children and young people, including multi-faith engagement in mosques, synagogues, and youth boards; and expanding the role of peer workers, nearly half of whom are from ethnic minority backgrounds. However, she admitted feedback systems like the Friends and Family Test are not capturing enough voices from diverse communities, so peer workers and advisory groups are essential in bridging that gap
Samina emphasised the role of the PCREF advisory group, which brings together service users, carers, voluntary sector organisations, and staff to scrutinise trust data and guide projects. She stressed transparency by involving the people actually delivering the work, holding them accountable, and ensuring that community voices influence outcomes. She also acknowledged challenges: national NHS changes and funding cuts risk diluting PCREF work, so she is advocating for a North London PCREF collaborative to align efforts across local mental health providers and share learning. Finally, she noted that patients and carers with long-term involvement must be given a stronger seat at the table, as their lived experience is crucial for shaping change.
After Samina’s presentation, a carer spoke about her frustration at struggling to access clear information on the trust’s anti-racist strategy. She explained that despite being part of the Haringey Service User and Carer Forum for many years and emailing various staff, she had received little response. The carer felt this was a missed opportunity, as service-user and carer forums could be powerful spaces for embedding anti-racist approaches. She emphasised that these groups already hear many concerns from families and communities, so they should be central to shaping change, especially given the NHS’s recent shift towards more community-based mental health services
Samina acknowledged th carer’s concerns and agreed that stronger links to service-user and carer forums across the five boroughs were vital. She said the challenge since her colleague left was not a lack of will but a drop in capacity, as her EDI team had been reduced in size. To address this, she planned to personally attend service-user forums (even if only once a quarter) to ensure communication wasn’t lost and updates reached carers directly. She stressed it was about embedding the work into the system, not leaving it solely to her or the EDI team. Samina invited the carer to connect with her offline, exchange emails, and join the PCREF advisory group, ensuring carers and service users from each borough had representation. She also underlined that community connections must feed upwards into trust decision-making, rather than being siloed
Advancing Carer Equality Initiatives – Triangle of Care & PCREF, Carers UK Black History month
I closed the session by giving a short update on my wider work around carers and PCREF. I explained that I chair the Triangular Care Community Group, which meets every two months and focuses strongly on carers’ mental health. This group is working on how Triangular Care Standards can be linked with PCREF implementation, making sure that carers, especially from minority backgrounds are properly included in the conversation. I also mentioned that Carers Trust is circulating a draft for feedback, and encouraged participants to get involved and share their views within the next week
I also highlighted my role as an volunteer & ambassador with Carers UK, where I help on raising the profile of unpaid carers. I flagged upcoming events, including a Black History Month event on 13th October, organised by Carers UK, where I will be speaking at.
If you are a carer or minority carer, please book for the online share & learn session below.
I encouraged attendees to use such opportunities to ask “the magic questions” about how influencial organisations will keep its focus and inclusion on minority carers
I then reminded everyone that collaboration across groups whether through PCREF forums, Carers Trust, or Carers UK, that it is vital to strengthening the voice of carers and ensuring equality.
I confirmed that the next forum meeting would be on 31st October and encouraged participants to spread the word so more carers, minority or otherwise, could join in the conversation.
Summary of the Ethnic Carers Forum Meeting – September
Multi-Angle Analysis
The meeting illustrated the deep-seated complexities of race and healthcare, revealing how institutional frameworks and practices intersect to affect service delivery and patient care. By advocating for the inclusion of diverse perspectives and leveraging collected data, participants aim to challenge systemic barriers that contribute to inequitable health outcomes. The call for community engagement underlined the need for actionable collaborations that transcend traditional healthcare models.
Technical Terminology
PCREF (Patient Carer Race Equality Framework): A strategic framework aimed at addressing health disparities experienced by marginalized racial and ethnic groups.
Race Science: Historical studies that claimed race was a biological determinant influencing health outcomes, which is now widely discredited.
Weathering: A term that describes the cumulative impact of social, economic, and environmental stressors on health outcomes over time.
Key Insights
The forum highlighted that systemic racism impacts health behaviors and access to resources, necessitating a reevaluation of how healthcare frameworks can better address the roots of health disparities.
There remains a critical gap in understanding the complexity of health outcomes related to racial and ethnic backgrounds, underscoring the need for comprehensive retraining of health professionals regarding these issues.
Actionable strategies for engagement with marginalized communities must be prioritized, as this will enhance the contextual understanding of healthcare needs.
Collaboration between organizations, local communities, and health professionals is essential for effective reform in healthcare delivery systems.
Continuous dialogue and reflective practice can lead to transformative outcomes within healthcare services.
FAQ
1. Why is the discussion surrounding race so critical in healthcare contexts? It is essential to address the impact that systemic racism has on health outcomes, access to care, and the overall well-being of marginalized communities. Understanding this context helps healthcare systems provide more equitable and effective care.
2. What is the significance of the Patient Carers Race Equality Framework (PCREF)? The PCREF serves as a guiding structure to ensure that care systems consider the specific needs of ethnic minorities, aiming to reduce health disparities and improve outcomes through focused strategies and policy implementations.
3. How can community engagement improve healthcare services? Engaging with communities allows healthcare providers to gain invaluable insights into the unique challenges they face, leading to tailored interventions that address these barriers effectively.
4. What steps can healthcare professionals take to address institutional racism? Healthcare professionals should actively engage in ongoing training regarding cultural competency, advocate for equitable policies, and ensure that their practices do not perpetuate discrimination.
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.
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.
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.
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.
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.
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.
The Power of Poetry and Storytelling in the Lives of Carers
Caring for a loved one with mental health challenges or chronic illness is a journey marked by both hardship and hope. Too often, the voices of carers those who provide unpaid, tireless support are overlooked in the broader conversation about health and wellbeing. Yet, as this moving gathering of carers and poets reveals, storytelling and poetry can be transformative tools for connection, healing, and advocacy. So it was an honour to host our first poetry event at Cygnet Churchill for the 13th of June during Carers Week 2025
This Blog explores the themes, experiences, and creative expressions shared by carers, drawing from a vibrant community event centered on poetry, storytelling, and the lived realities of those who care. Through their words, we gain insight into the emotional landscape of caring, the challenges faced, and the resilience that emerges when stories are shared.
To watch the performance, please view the video below.
Giving Carers a Voice: The Motivation Behind the Book
The host of the event was myself (Matthew McKenzie), as a prolific author and advocate, where I have dedicated my eighth book to amplifying the voices of mental health carers. For me, books are more than just a means of communication they are a way to reach people who might otherwise remain unheard.
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.
A Caring Mind 