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.
Understanding Schizophrenia: Breaking the Silence and Challenging Stigma
Schizophrenia remains one of the most misunderstood mental health conditions, often shrouded in myths, misconceptions, and stigma. As National Schizophrenia Awareness Day took place on July 25th, it is an opportune moment to reflect on the realities of living with schizophrenia, the challenges faced by those affected, and the crucial role of unpaid carers.
This article taken as a transcript from my video delves into the importance of awareness, the lived experiences of individuals and their families, and the collective responsibility to foster understanding and support.
The Significance of National Schizophrenia Awareness Day
National Schizophrenia Awareness Day, observed annually on July 25th in the UK, is more than just a date on the calendar. It is a day dedicated to raising awareness, challenging stigma, and building understanding around schizophrenia which is a condition that affects approximately one in every 100 people in the UK. The day is spearheaded by organizations such as Rethink Mental Illness, Change Mental Health in Scotland, Adared Recovery in Wales, and Mindwise in Northern Ireland. Together, these organizations form Mental Health UK, a collaborative effort to provide vital support and advocacy for those living with schizophrenia and their carers.
What is Schizophrenia?
Schizophrenia is a complex mental health condition characterized by a range of symptoms, including hallucinations, delusions, and disorganized thinking. However, it is essential to recognize that schizophrenia is not a one-size-fits-all diagnosis. The experience of schizophrenia exists on a spectrum, with each individual’s journey being unique. For some, symptoms may be more pronounced, while others may experience periods of stability and recovery.
Common Symptoms
Hallucinations: Sensing things that are not present, such as hearing voices.
Delusions: Strongly held false beliefs that are not based in reality.
Disorganized Thinking: Difficulty organizing thoughts, leading to incoherent speech or trouble concentrating.
Despite these clinical descriptions, it is crucial to remember that schizophrenia is, above all, a human experience. The condition affects not only the individual but also their families, friends, and communities.
The Human Experience: Beyond the Diagnosis
Too often, the narrative around schizophrenia is dominated by fear, misunderstanding, and negative stereotypes. Individuals living with schizophrenia frequently face stigma, isolation, and discrimination not only just from society at large, but sometimes even within the mental health system and healthcare services themselves. This stigma can be even more pronounced for those from minority groups, compounding the challenges they already face.
The Impact of Stigma
Stigma surrounding schizophrenia can have far-reaching consequences. It can:
Discourage individuals from seeking help or treatment.
Lead to social isolation and exclusion.
Affect employment and educational opportunities.
Create barriers to accessing quality healthcare.
Challenging these misconceptions requires a collective effort to educate the public, promote empathy, and highlight the real stories of those living with schizophrenia.
The Unseen Heroes: Unpaid Carers
While much attention is rightly given to those living with schizophrenia, there is another group whose contributions often go unrecognized—unpaid carers. These are the family members, close friends, partners, and loved ones who provide daily support to individuals with schizophrenia. Their role is both vital and demanding, yet their voices are frequently underrepresented in policy discussions, service planning, and awareness campaigns.
Who Are Unpaid Carers?
Unpaid carers are individuals who, without formal training or compensation, dedicate their time and energy to supporting someone with schizophrenia. This support can take many forms, including:
Emotional Support: Listening, comforting, and advocating for their loved one.
Crisis Management: Staying up late, managing emergencies, and ensuring safety.
Practical Assistance: Helping with daily tasks, medication management, and appointments.
Financial Support: Bearing the costs associated with care, often at personal expense.
The burdens carried by unpaid carers are not just emotional but can also be financial and physical. Despite their critical role, they often receive limited support and recognition.
The Lived Experience of Carers
Many carers, like the speaker’s own mother, navigate the complexities of supporting a loved one with schizophrenia with little guidance or acknowledgment. They become advocates, crisis managers, and emotional anchors, often at the expense of their own well-being. The lack of formal training and support can leave carers feeling isolated and overwhelmed.
Building a Better Future: What Needs to Change
Raising awareness about schizophrenia is not just about increasing knowledge—it is about fostering a culture of care, action, and inclusion. To truly support those affected by schizophrenia and their carers, several key areas need attention.
1. Improving Services and Support
Mental health services must be designed to listen to and address the needs of both individuals with schizophrenia and their carers. This includes:
Accessible Support: Ensuring timely access to mental health services and crisis intervention.
Carer Involvement: Actively involving carers in care planning and decision-making.
Tailored Resources: Providing information, training, and respite for carers.
2. Promoting Inclusive Research
Research into schizophrenia should not only focus on clinical outcomes but also incorporate the experiences of unpaid carers. Their insights are invaluable in understanding the full impact of the condition and in developing effective interventions.
Participatory Research: Engaging carers as partners in research projects.
Holistic Approaches: Studying the social, emotional, and economic effects of schizophrenia on families.
3. Educating the Public
Public education is essential to dispel myths and challenge outdated beliefs about schizophrenia. Awareness campaigns should:
Highlight Lived Experiences: Share real stories from individuals and carers.
Combat Stereotypes: Address common misconceptions and promote accurate information.
Encourage Empathy: Foster understanding and reduce fear and prejudice.
4. Policy and Advocacy
Policymakers must recognize the contributions of unpaid carers and ensure their needs are reflected in mental health policies. This includes:
Carer Rights: Protecting the rights of carers in the workplace and healthcare settings.
Financial Support: Providing financial assistance and benefits to carers.
Representation: Including carers in policy development and service evaluation.
The Power of Awareness: Moving Beyond Knowledge
Awareness is not a passive state, it is an active commitment to care, act, and include others. National Schizophrenia Awareness Day serves as a reminder that understanding schizophrenia goes beyond statistics and symptoms. It is about recognizing the humanity of those affected, valuing the contributions of carers, and working together to create a more inclusive and supportive society.
Taking Action: How You Can Help
Everyone has a role to play in challenging stigma and supporting those affected by schizophrenia. Here are some ways you can make a difference:
Educate Yourself: Learn about schizophrenia from reputable sources and listen to the experiences of those affected.
Challenge Stigma: Speak out against stereotypes and discrimination when you encounter them.
Support Carers: Offer practical help, emotional support, or simply a listening ear to carers in your community.
Advocate for Change: Support policies and organizations that promote mental health awareness and carer rights.
Share Awareness: Use your voice and platforms to spread awareness, especially on days like National Schizophrenia Awareness Day.
Personal Reflections: The Importance of Inclusion
As highlighted in the video, awareness is not just about knowing—it is about caring, acting, and including others. The journey of living with schizophrenia, or supporting someone who does, is often marked by resilience, compassion, and hope. By listening to and amplifying the voices of those with lived experience, we can build a more understanding and supportive world.
The Role of Community
Community support is vital for both individuals with schizophrenia and their carers. Whether through peer support groups, advocacy organizations, or informal networks, connection and solidarity can make a significant difference. Communities that prioritize mental health and inclusion are better equipped to challenge stigma and provide meaningful support.
The Value of Recognition
Recognition of the efforts and sacrifices made by unpaid carers is long overdue. Their dedication sustains individuals and families, often in the face of immense challenges. By acknowledging and supporting carers, we not only improve their well-being but also enhance the quality of care for those living with schizophrenia.
Looking Ahead: Hope and Progress
While the challenges associated with schizophrenia are significant, there is reason for hope. Advances in research, growing public awareness, and the tireless efforts of advocacy organizations are paving the way for a more inclusive and supportive future. By working together—individuals, families, communities, and policymakers—we can break the silence, challenge stigma, and ensure that no one faces schizophrenia alone.
A Call to Action
As National Schizophrenia Awareness Day approaches, let us commit to more than just awareness. Let us strive for understanding, compassion, and action. Whether you are living with schizophrenia, supporting a loved one, or simply seeking to learn more, your voice and efforts matter. Together, we can build a society that values every individual and supports every carer.
Conclusion
Schizophrenia is a complex and deeply human experience, affecting not only those diagnosed but also their families, friends, and communities. National Schizophrenia Awareness Day is a powerful reminder of the importance of awareness, inclusion, and action. By challenging stigma, supporting unpaid carers, and advocating for better services and understanding, we can create a world where everyone affected by schizophrenia is valued, supported, and empowered.
Let us use this day and every day to listen, learn, and act. Share stories, challenge myths, and offer support. In doing so, we honor the resilience of those living with schizophrenia and the dedication of their carers, building a more compassionate and inclusive future for all.
Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum
On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.
This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.
Highlights from July’s Forum
🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.
🟣 Powerful Feedback from Carers Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”
Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.
These testimonies highlighted how far we still need to go.
🟡 Inclusive Language & Representation There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.
🟢 The Work Ahead Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.
A Forum of Global Carers, Local Action
This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.
One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.
Want to Get Involved?
The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.
For bookings or questions, contact me at info@caringmindblog.com 📱 Or download and scan the QR code in the flyer above
Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.
Next National MH carer forum in August 29th 10:30 am Matthew McKenzie Founder – Caring Mind Blog Facilitator – National Ethnic Mental Health Carer Forum
Are you someone living with mental illness or a carer of someone who is or who’s received prescriptions from a pharmacist prescriber? If so, your voice matters.
A new research study led by The University of Manchester is seeking participants to explore how people with mental illness and their carers experience care from pharmacist prescribers in the community. Whether your contact was through your GP practice or a community mental health team, this is your chance to make a difference in the future of mental health services.
Why This Research Matters
Pharmacist prescribers play a growing role in community-based mental health services. They can diagnose conditions, prescribe medication, and adjust treatment all without the immediate involvement of a doctor. But how does this model of care feel from the patient’s or carer’s perspective? That’s exactly what this study wants to understand.
By sharing your experiences, you’ll help shape future services, highlight what’s working, and bring attention to where improvements are needed.
Who Can Participate?
You can take part if you:
Are 18 or older
Live in the UK
Speak fluent English
Have experience with a pharmacist prescriber in a general practice or community mental health team
Carers are also welcome, especially if you provide unpaid support to someone with a mental illness, including help with their medication.
Additionally, the study is interested in hearing from representatives of charities or community organisations who support these individuals.
What Is a Pharmacist Prescriber?
Not sure if you’ve been treated by one? Here’s how you can tell:
They diagnosed a condition you have (mental health or otherwise).
They wrote or changed a prescription for you without needing a doctor’s sign-off.
You may have met them in a GP practice or community mental health setting.
Ready to Contribute?
If you’re interested in taking part, or want to learn more, please contact:
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.
As the NHS looks to the future with its ambitious 10-Year Plan, one critical group continues to be overlooked cancer carers, although I am not forgetting Mental Health carers. These are the unpaid family members, friends, and loved ones who provide essential care and emotional support to people living with cancer.
While the plan addresses key priorities like digitalization and community-based health reform, it fails to fully recognize the vital role of caregivers in our healthcare ecosystem.
The blog is a transcript of my video, which you can watch below.
Reform Through Inclusion
The NHS 10-Year Plan aims to reshape health services by emphasizing digital tools, preventive care, and stronger local networks.
These initiatives are undoubtedly important. But without recognizing and integrating the contributions of cancer caregivers, the plan risks missing a vital component of patient care.
The Invisible Workforce
Caregivers are often the unsung heroes of cancer care. They manage appointments, administer medications, provide emotional support, and serve as advocates all while coping with their own mental and physical toll.
Challenges Faced by Cancer Carers:
Mental Health Impacts: The stress, anxiety, and emotional burden can be overwhelming.
Decision Fatigue: Carers are often thrust into complex medical decision-making without adequate support or guidance.
Lack of Recognition: Despite their contributions, caregivers are rarely acknowledged as part of the healthcare team.
A Call for Systemic Change
The inclusion of carers in healthcare reform isn’t just an ethical necessity it’s a strategic imperative. By empowering carers, we enhance patient outcomes, reduce strain on NHS services, and promote more holistic care.
Recommendations for Inclusion:
Training for Carers: Equip caregivers with tools to better navigate health systems and support patient needs.
Support Services: Invest in respite care, mental health support, and caregiver-specific community services.
Recognition in Policy: Classify caregivers as essential stakeholders in healthcare planning and delivery.
Co-Production: Designing Services With Carers
One of the most powerful messages from the discussion is the importance of co-production. That means actively involving carers in designing and shaping NHS services not just consulting them after the fact.
Co-Production Actions:
Involve Carers in Service Design: Make caregiver feedback a routine part of NHS planning.
Policy Advocacy: Push for legal and procedural reforms that recognize the role of carers from day one.
The Road Ahead
Cancer caregivers are not just a support system they are key partners in the healthcare journey. If the NHS truly seeks to build a more inclusive, responsive, and sustainable health system, caregivers must be central to its 10-Year Plan.
Let’s stop treating caregivers as an afterthought. Let’s make them co-creators of the future of care.
Support Sites for Cancer Carers
1. Carers UK
Provides advice, online forums, factsheets, and rights information for unpaid carers across the UK. https://www.carersuk.org
2. Carers Trust
Supports a network of local carer organisations across the UK. Offers practical help, grants, and local service finders. https://www.carers.org
A network of cancer support centres offering free emotional, psychological, and practical support to anyone affected by cancer—including carers. https://www.maggies.org
Alcohol Awareness Week is an annual event dedicated to raising awareness about the impact of alcohol on individuals, families, workplaces, and society at large. In 2025, the event will run from the 7th to the 13th of July, spearheaded by the charity Alcohol Change UK.
To watch the video version of my blog, see below. The blog is a transcript of the video.
This year’s theme, “Alcohol and Work,” brings a crucial focus to how alcohol consumption affects not just personal health, but also professional performance, workplace relationships, and overall well-being.
The Broader Impact of Alcohol
Alcohol is often viewed through the lens of personal choice and individual health. However, its effects ripple far beyond the person consuming it. The consequences of harmful drinking habits can be seen in diminished work performance, strained relationships, compromised safety, and a decline in mental health. Behind every statistic lies a human story on one that often includes addiction, isolation, and the silent struggles of those who care for someone affected by alcohol dependency.
Alcohol and the Workplace: A Hidden Challenge
The Unseen Effects on Performance and Safety
Alcohol’s impact on the workplace is multifaceted. It can lead to decreased productivity, increased absenteeism, and even safety risks, especially in roles that require high levels of attention and responsibility. The pressure to perform, long working hours, and high-stress environments can sometimes drive individuals to use alcohol as a coping mechanism. This, in turn, can create a cycle where alcohol use further impairs work performance, leading to more stress and potentially more drinking.
The Human Stories Behind the Statistics
It’s easy to overlook the personal narratives behind the numbers. In the UK, approximately one in four people drink in ways that could be harmful to their health. For some, this escalates into dependency, isolation, and crisis. The journey into alcohol dependency is rarely straightforward or visible. It can be masked by a smile, hidden behind long hours at the office, or dismissed with a casual “I’m fine.” The reality is often much more complex and painful.
The Ripple Effect: Unpaid Carers and Their Silent Struggles
The Burden on Unpaid Carers
One of the most overlooked aspects of alcohol-related harm is its impact on unpaid carers. These are the partners, parents, siblings, friends, and even colleagues who quietly support someone struggling with alcohol dependency. Unpaid carers often juggle their own work and family responsibilities while shouldering the emotional and practical burdens of caring for someone else.
The challenges faced by unpaid carers are immense. Many carry this burden alone, with little support or recognition. They may sacrifice sleep, income, and their own mental health in the process. The emotional strain can be overwhelming, and the lack of support can lead to feelings of isolation and helplessness.
The Need for Recognition and Support
It’s time to shine a light on the pressure, pain, and silence that unpaid carers endure. Their contributions are invaluable, yet they often go unnoticed. Recognizing their struggles and providing them with the support they need is essential, not just for their well-being, but for the well-being of those they care for.
Breaking the Silence: The Power of Conversation
Starting the Conversation
One of the most effective ways to address alcohol-related harm is to start a conversation. Breaking the stigma surrounding alcohol dependency begins with open, honest dialogue. If you’re concerned about someone’s drinking habits, reaching out and expressing your concern can be a powerful first step. Sometimes, simply asking, “How are you doing?” can make a world of difference.
Sharing Resources and Support
In addition to conversation, sharing resources is crucial. Organizations like Alcohol Change UK provide valuable information, helplines, and support services for those affected by alcohol dependency. Sharing these resources, whether it’s a helpful video, a website, or a helpline number which can offer much-needed support to someone in need.
Supporting Unpaid Carers
For those who focus on supporting unpaid carers, it’s important to acknowledge their unique challenges. Offering a listening ear, practical assistance, or simply checking in can provide much-needed relief. Carers often feel invisible, so small gestures of support can have a significant impact.
Raising Awareness: Everyone Has a Role
Online, at Work, and in the Community
Raising awareness about the harms of alcohol and the support available is a collective responsibility. Whether it’s through online campaigns, workplace initiatives, or community events, every effort counts. The more we talk about these issues, the less people will suffer in silence.
Building a Culture of Care
Ultimately, the goal is to foster a culture of care, one where no one has to face addiction or the challenges of caring for someone with addiction alone. By working together, we can reduce the harm caused by alcohol, support one another, and create a more compassionate society.
Practical Steps for Getting Involved
1. Educate Yourself and Others
Understanding the facts about alcohol and its effects is the first step. Visit reputable sources like Alcohol Change UK to learn more about the risks associated with alcohol consumption, the signs of dependency, and the support available.
2. Start Conversations
Don’t be afraid to talk about alcohol and its impact. Whether it’s with friends, family, or colleagues, open dialogue can help break down stigma and encourage those struggling to seek help.
3. Share Resources
Distribute information about support services, helplines, and educational materials. The more accessible these resources are, the more likely people are to use them.
4. Support Unpaid Carers
If you know someone who is caring for a person with alcohol dependency, offer your support. This could be as simple as checking in regularly, offering to help with practical tasks, or encouraging them to seek support for themselves.
5. Advocate for Change
Encourage your workplace or community to participate in Alcohol Awareness Week. Organize events, share information, and promote policies that support those affected by alcohol-related harm.
The Importance of Compassion and Understanding
Recognizing the Human Element
Behind every case of alcohol dependency is a person with a unique story. Compassion and understanding are essential in supporting those affected. Avoid judgment and focus on offering support and encouragement.
The Role of Empathy in Recovery
Empathy can be a powerful tool in helping someone change their relationship with alcohol. Listening without judgment, offering encouragement, and being patient can make a significant difference in someone’s journey to recovery.
The Role of Workplaces in Addressing Alcohol-Related Harm
Creating Supportive Environments
Workplaces have a unique opportunity to support employees affected by alcohol-related harm. This can include providing access to counseling services, promoting work-life balance, and fostering a culture where employees feel comfortable seeking help.
Implementing Policies and Training
Employers can implement policies that address alcohol use in the workplace, provide training for managers on how to support employees, and ensure that support services are readily available.
Encouraging Peer Support
Peer support programs can be effective in helping employees feel less isolated and more supported. Encouraging open dialogue and creating safe spaces for discussion can help break down barriers to seeking help.
The Ongoing Challenge: Reducing Stigma
video from Alcohol Change UK
Why Stigma Persists
Stigma remains one of the biggest barriers to seeking help for alcohol dependency. Many people fear judgment or discrimination, which can prevent them from reaching out for support.
How to Combat Stigma
Education and awareness are key to reducing stigma. By sharing stories, promoting understanding, and challenging misconceptions, we can create a more supportive environment for those affected by alcohol-related harm.
Looking Ahead: Building a Supportive Future
The Importance of Continued Awareness
Alcohol Awareness Week is an important opportunity to shine a light on the challenges associated with alcohol use. However, the work doesn’t end when the week is over. Continued awareness, education, and support are essential in creating lasting change.
Working Together for Change
Change is possible when we work together. By supporting one another, raising awareness, and advocating for better support systems, we can reduce the harm caused by alcohol and build a more compassionate society.
Resources for Support
Alcohol Change UK: alcoholchange.org.uk – A leading charity providing information, support, and resources for those affected by alcohol-related harm.
Helplines and Support Services: Many organizations offer confidential helplines and support services for individuals and carers.
Workplace Support: Check with your employer about available support services, employee assistance programs, and mental health resources.
Conclusion: A Call to Action
Alcohol Awareness Week 2025 is a vital opportunity to reflect on the impact of alcohol in our lives, workplaces, and communities. By starting conversations, sharing resources, supporting unpaid carers, and raising awareness, we can make a real difference. Let’s work together to understand the harm that alcohol can cause, support one another, and build a culture of care, because no one should have to face addiction or care for someone with addiction alone.
Let’s make this Alcohol Awareness Week a turning point for greater understanding, compassion, and support.
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.
Understanding the Hidden Struggles of Ethnic Minority Carers Caring for a loved one with mental illness can come with challenges, but for many ethnic minority carers, the journey is made more challenging by cultural stigma, language barriers, and a deep-rooted mistrust of formal health systems.
These carers often carry immense responsibility behind closed doors, with little recognition or support. Despite their dedication, many avoid reaching out to mental health services—not because they don’t care, but because past experiences have taught them to be cautious, even fearful.
What Is Institutional Distrust and Why Does It Matter? Institutional distrust refers to the lack of confidence in systems like healthcare, social care, or government services. For ethnic minority carers, this distrust is often grounded in real experiences of discrimination, cultural insensitivity, or the fear of losing control over a loved one’s care.
When services fail to understand or respect a carer’s background, the result is silence and isolation leaving carers to cope alone, without the help they may desperately need.
A Short Video Giving Voice to Unheard Stories To shed light on this important issue, I’ve created a short video presentation: “Institutional Distrust: Why Many Ethnic Carers Avoid Formal Services”
This video draws on the voices and lived experiences of unpaid carers, especially those from ethnic minority backgrounds. It explores the emotional weight they carry, the cultural barriers they navigate, and the urgent need for services to become more inclusive, respectful, and culturally aware.
Why Sharing These Stories Matters If we truly want to support carers from all backgrounds, we must first listen and really listen to what they’re telling us. By naming institutional distrust and understanding its roots, we can begin to rebuild trust and create spaces where carers feel safe to seek help.
Please watch and share the video, and let’s continue the conversation about what real support looks like for ethnic minority carers in mental health.
A Caring Mind 