Tag Archives: carer advocacy

NHS Digital Revolution: Empowering Unpaid Carers

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

From Matthew McKenzie – Carer activist

Below is a transcript of my video

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

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

Understanding the Role of Unpaid Carers

The Backbone of Community Care

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

The Double Burden

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

The NHS 10-Year Plan and the Digital Revolution

What’s Changing in the NHS?

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

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

The Promise of Technology

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

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

The Risks of Exclusion

Barriers to Digital Inclusion

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

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

The Danger of Being Left Behind

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


Making Digital Healthcare Work for Carers

The Need for Training and Support

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

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

Inclusion in Care Records and Decision-Making

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

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

Co-Designing Digital Tools

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

Practical Steps for Carers

Engaging with the NHS App

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

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

Seeking Support and Sharing Feedback

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

Building a Community of Support

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

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

Recognizing Carers as Partners, Not Visitors

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

Reducing Pressure on the System

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

Building Digital Solutions with People at the Center

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

Looking Ahead: Embracing Change Together

The Constant of Change

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

Shaping the Future

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

A Call to Action

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

Conclusion

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

Institutional Distrust Why Many Ethnic Carers Avoid Formal Services

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.

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

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

Carers Week Collaboration Discussion

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

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Voices of Mental Health Carers: Poetry & Stories

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.

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Cygnet National Carers Event – Carers Week 2025

By Matthew McKenzie, Carer Ambassador, Cygnet Health Care

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

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

Agenda Highlights

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

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

Written by: Matthew McKenzie – WLHT co-facilitator of ethnic carer group and Triangle of Care Community Chair

The Irish Cultural Centre in Hammersmith was filled with warmth and purpose on June 12th, as carers, professionals, and community leaders came together for the West London NHS Trust’s Carers Event in support of Carers Week 2025.

As Chair of the Triangle of Care Community and an involved carer for West London NHS Trust, I was interested in the carers conversations, and sense of solidarity among all those present.

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Triangle of Care Community group update May 2025

Here is a brief update of the Triangle of Care Community group for the month of May 2025. The Triangle of Care Community group is a collaborative forum that champions the voices of unpaid carers in mental health services. The group works in partnership with service users, carers, and professionals to embed the principles of the Triangle of Care, promoting shared decision-making, improved communication, and recognition of carers as equal partners in care.

Our most recent meeting brought together carers, NHS professionals, researchers, and advocates from across the UK, including representatives from Kent, Bristol, Lewisham, East Sussex, and Hertfordshire. The atmosphere was one of mutual respect, knowledge-sharing, and a shared drive to improve the experience of care for carers and their loved ones.

The meeting covered updates on Triangle of Care developments, including recent accreditations and ongoing pilots to adapt the model for various healthcare and social settings. Presentations were given on research studies related to mental health care, including pharmacist prescribers’ roles and experiences of underserved older male carers. The group also discussed campaigns for increased research funding in serious mental illnesses and initiatives to support carers, such as Carers Roadshows.

Triangle of Care Expansion Updates

Mary Patel one of the Triangle of Care leads, provided an update on Triangle of Care developments and accreditations. Several healthcare providers have recently gained Star awards. There are ongoing pilots to adapt Triangle of Care for social care settings and to incorporate criteria for better support of racially marginalized carers. Mary announced that the Triangle of Care community group will be formally brought on board with Carers Trust, with Matthew as the inaugural chair for a 2-year term. They are looking to bring on co-chairs to support Matthew in his role.

Triangle of Care Implementation Updates

The group discusses recent achievements in implementing the Triangle of Care model across various healthcare organizations. Gabrielle Richards who leads on carers at South London & Maudsley reported that her trust successfully completed their Star 2 accreditation assessment for community services.

Matthew McKenzie shared a video poem he created about the Triangle of Care as it was shown during the peer review at South London & Maudsley.

Kelvin thanked Gabrielle for her contributions as she prepares to leave her role. Louise from Kent and Medway NHS Trust reported they maintained their second star accreditation and have implemented new processes to ensure carer considerations are included in policy development.

https://www.kmpt.nhs.uk/carers/triangle-of-care/

Mental Health Care Research Study

Richard introduced Bashir Al Saeed, a PhD student from the University of Manchester, to present their research study on the experiences of people with mental illness and their carers when receiving care from pharmacist prescribers in the community.

Bashir explains that the study aims to understand and improve care provided by pharmacist prescribers for people with mental illnesses in community-based settings. Participants will be asked to take part in a one-hour interview and will receive £30 as compensation.

The study is seeking individuals aged 18 or older with mental illnesses or their unpaid carers who have received care from pharmacist prescribers in the UK. A discussion follows about the inclusion criteria, particularly regarding the requirement for fluency in English, with concerns raised about potential issues against non-English speakers

Mental Health Research Campaign Initiative

The group discussed a campaign for better research into long-term serious mental illness in working-age people. Irene explained that they have been working on this campaign for a year, collaborating with experts from Oxford and the Welcome Trust.

The campaign aims to gather signatures and includes a short video. Irene emphasizes the importance of this initiative, as many in their group have loved ones who have been ill since their teens and are now in their thirties and forties.

You can find out more about the campaign from the link below.

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

Advocating for Psychosis Research Funding

The discussion focuses on a petition to increase government funding for research into psychosis, including its diagnosis, prevention, and treatment. Irene passionately advocates for more effective medications with fewer side effects, emphasizing the need for better understanding of the underlying causes of psychosis. A carer shared personal experiences of her son’s struggles with mental illness and medication side effects. The group discusses the importance of signing and sharing the petition to gain government support for accelerated research in this area.

Pharmacist Prescribing for Mental Health

The discussion focuses on pharmacists prescribing for mental health conditions. Richard explains that some pharmacists, especially those with specialized training, are caring for people with mental illnesses in various settings. However, the extent of their involvement in prescribing and monitoring is still unclear. A carer expressed concern about pharmacists prescribing for severe conditions like bipolar disorder without extensive training. The group discusses the need for proper qualifications and access to medical records. Richard emphasizes that the study aims to understand and improve the care provided by pharmacist prescribers in community services.

Carers Roadshows: Community Support Network

Trevor a carer involved at Notts NHS described his Carers Roadshows, which he has been organizing since 2013. These free events bring together various organizations dealing with health, mental health, and social care to provide information and support to carers and patients.

Trevor emphasizes the importance of communication in triangular care and sees the roadshows as an effective, sustainable tool for fostering connections between different organizations and the community. He expresses his ambition to expand the roadshows across the country, particularly in London boroughs, and offers to help others create their own roadshows using his four-step guide.

Older Male Carers Advisory Group

Steve Owen from the University of Hertfordshire presents his research project on exploring the experiences of underserved older male carers. The project aims to set up an advisory group of 7-10 older men, particularly from minority ethnic groups, same-sex relationships, and rural/coastal areas, to meet from June to December 2025.

The research group will discuss the benefits and challenges of caring, gender dynamics, and access to support. The project’s goals are to develop a grant proposal for further research and improve advisory group guidelines. Steve is still recruiting participants and welcomes help in sharing information about the project.

Final Reflections

The session highlighted both the progress and the gaps still faced by carers, particularly around communication, access to services, and recognition. The Triangle of Care model continues to be a vital tool in bridging these gaps, but it is the commitment of carers and professionals alike that drives real change.

“Thank you for another great meeting Matthew and everyone.” – Linda Thomas
“These meetings have been such a resource for us all.” – Gabrielle Richards
“Powerful video, powerful voices. Thank you everyone.” – Claire Wood

I’m proud to be involved and help lead as triangle of care community as Chair and look forward to building our impact together. If you’re interested in co-chairing or getting more involved, please reach out let’s continue to shape mental health care that values and includes carers at every level.

Challenges of Carer Over involvement in Mental Health Caregiving

Understanding Over-Involvement as a Mental Health Carer

Welcome to another lecture taken off my YouTube channel. If you want to watch the lecture please see the video below.

Caring for a loved one with long-term mental ill health is a profound act of compassion, resilience, and often necessity. For countless unpaid carers, the daily reality involves advocating, supporting, and filling in the ever-widening gaps left by under-resourced mental health systems. But amid this dedication, a challenging reality emerges: what happens when you become “too involved” as a mental health carer?

Navigating the boundary between healthy support and over-involvement is fraught with emotional, social, and systemic complexities. For many carers, especially those without significant backup or support from services, over-involvement isn’t a deliberate choice. Rather, it’s a reaction to anxiety, lack of resources, unavailable respite, or a deep sense of responsibility, factors often compounded by the failures of the very systems meant to help.

This article explores the nuanced challenges of over-involvement, the psychological and social fallout for carers, the systemic pitfalls that fuel this cycle, and constructive pathways forward.


What Does It Mean to Be “Too Involved”?

Over-involvement as a mental health carer doesn’t refer to love or dedication, but to a state where healthy boundaries are blurred. It can look like:

  • Constantly monitoring or managing every decision or behavior: Driven by anxiety, the carer feels compelled to oversee every aspect of their loved one’s life.
  • Neglecting one’s own needs and identity: Support shifts from helping to living solely for the cared-for person, with carers sidelining their own health and well-being.
  • Becoming the sole or primary source of support with little to no backup: In the absence of adequate services, carers take on overwhelming responsibility.
  • Feeling unable to step away—even when necessary: Carers may feel there’s simply no option to rest, leading to chronic exhaustion.

While not every carer will experience all of these, most will likely encounter at least some, especially during crises or prolonged periods of under-resourcing.


The Emotional and Social Toll of Over-Involvement

Burnout and Fatigue

The most immediate impact of over-involvement is caregiver burnout. Continual vigilance, lack of sleep, and emotional strain take a heavy toll. Fatigue accumulates until carers can no longer function effectively, putting their own mental health at risk.

Guilt, Anxiety, and Isolation

Carers often wrestle with overwhelming guilt—fearful of not doing enough, or of something going wrong in their absence. Anxiety about possible crises or relapses becomes a constant presence. Over time, this anxiety, coupled with a lack of support, leads to profound isolation: friends, hobbies, and social ties erode under the relentless demands of caring.

Loss of Identity

Many carers experience a blurring, or even a loss, of their personal identity. They become “the carer,” subsuming roles as a partner, parent, sibling, or friend. The world shrinks to the immediate needs of the cared-for person, often at the expense of the carer’s own aspirations and selfhood.

Depression and Hopelessness

Without respite or validation, carers can slip into depression. Hopelessness stems from the sense that there is no help available and nobody understands the unrelenting emotional labor.

Neglect of Personal Health and Finances

Skipping one’s own medical appointments, neglecting health, and losing the ability to work full or even part-time are all too common. The financial strain can be devastating, adding yet another layer of stress.

Social Withdrawal and Relationship Strain

Over-involvement is a key driver of relationship breakdowns—not just with friends and work, but with the cared-for person. Overreliance on the carer can breed resentment on both sides, fueling conflicts, codependency, and, on the part of the cared-for person, a diminished sense of autonomy and independence.


Systemic Failures: Why Carers Become Over-Involved

Underfunded and Overstretched Services

The reality for many mental health carers is that the system simply doesn’t provide for the needs of those with mental health conditions—let alone their carers. Cuts to services, lack of staff, and waiting lists mean that carers are left to fill the gaps. They become, by necessity, the constant support, regardless of personal capacity.

Lack of Communication and Training

Poor communication from health or social services leaves carers in the dark. With no clear guidance or explanation of the cared-for person’s needs, diagnosis, or care plan, carers are left to guess, manage, and advocate alone. Often, vital training around role limitations or healthy boundaries is missing entirely.

Delayed or Insufficient Care Provision

When care is delayed or inadequate, carers are expected to step up, often without assessment or recognition. Insufficient professional support forces carers to take on roles they may not feel prepared for.

Weak Support and Community Networks

With respite care and carer centers decreasing in number and capacity, finding relief or support is increasingly difficult. Carers are isolated, unable to share experiences, access information, or receive the validation needed to carry on effectively.


The Double-Edged Sword of Professional Involvement

When Professionals Flag “Over-Involvement”

Health professionals may at times flag a carer as being “too involved” and, in some cases, limit or block their involvement in treatment or information sharing. While, in theory, this is a safeguard to protect the autonomy and recovery of the person with mental health needs, in practice it often plays out as a means of gatekeeping, especially in overburdened services.

Confidentiality laws may be invoked, sometimes rightly, sometimes in a blanket manner—leaving carers excluded from vital care discussions. “Gatekeeping” behaviors can include:

  • Restricting carers from meetings, updates, or ward visits
  • Using complex jargon to confuse or minimize a carer’s role
  • Citing a carer’s emotional state as evidence they may be a hindrance, thereby weaponizing carer fatigue

The Controversy: Persistence vs. Over-Involvement

A difficult question arises: when does persistence and advocacy for a loved one become “over-involvement”? Too often, carers asking difficult questions or pushing for better care are labeled obstructive or overbearing, sometimes as a way for professionals to deflect accountability for insufficient services or to reduce pressure on their own overstretched roles.

Yet, the very qualities needed in good carers—advocacy, persistence, commitment to high standards of care—may be used against them. Without structure, dialogue, and mutual respect, the risk is that carers are shut out, leaving both carer and cared-for at greater risk.


The Vicious Cycle: Carer Fatigue as a Reason for Exclusion

Systemic failure has a way of compounding itself. Carers are forced to step in because services are lacking. This necessary over-involvement leads to fatigue, stress, and sometimes mistakes or emotional responses. Professionals then point to this fatigue as a reason to exclude the carer or question their suitability—without offering alternatives or meaningful support. The end result: everyone loses, most of all the person in crisis.


Best Practices: Constructive Solutions and Support Strategies

Respite and Connection: The Need for Rest and Support Networks

Respite care, though increasingly scarce—is essential. Time off to rest, reset, and re-engage with passions outside the caring role is not a luxury but a lifeline.

Equally vital are carer support groups and centers, whether formal (hospital, community organizations) or informal (peer-organized). These provide:

  • Connection and reduced isolation
  • Information about navigating the mental health system
  • Validation and shared experience
  • Opportunities to strengthen one’s own identity

Many carers find that meeting others, even infrequently, offers practical ideas and emotional relief.

Learning to Set Healthy Boundaries

Establishing boundaries is crucial, but incredibly hard—especially when no backup options exist. Carers benefit greatly from structured education about:

  • The scope and limits of their role
  • When to step back, and how to do so without guilt
  • How to communicate their boundaries to professionals and family

Such education is often, unfortunately, lacking. Professional services have a duty to provide training and guidance, both for the carer’s health and for the relationship with the cared-for person.

Professional Education and Constructive Inclusion

Mental health professionals need ongoing training—not just on mental health conditions, but on carer engagement and support. Constructive inclusion means:

  • Sharing appropriate (non-confidential) information with carers
  • Involving carers in care planning and discussions
  • Recognizing their unique insights, without over-relying on them
  • Actively supporting carers to take breaks or step back as needed

Shared Responsibility, Not Transferred Responsibility

Mental health systems must prioritize shared responsibility. Carers should neither be left to do everything (“just get on with it”) nor shut out completely. Effective service provision means:

  • Joint care planning that integrates professionals, patients, and carers
  • Policies that match available resources—rather than just shifting risk onto families
  • Building a culture of respect and inclusion, not suspicion or blame

Carers’ Right to Step Back

Carers should feel empowered to step back from their role, even temporarily, without fear of catastrophe or overwhelming guilt. This is only possible in systems that provide meaningful support and backup—not merely moral encouragement.


Final Reflections: Moving Forward with Awareness and Compassion

The challenges of over-involvement as a mental health carer are not a sign of personal failure. More often, they reflect the shortcomings of a fragmented, under-resourced system that expects too much while providing too little.

No approach will be perfect. Sometimes, even with the best intentions, carers will cross the line into over-involvement. What’s essential is recognizing these moments not as failures, but as signals to seek connection, education, respite, or professional guidance.

For professionals, the task is to move beyond gatekeeping and work with carers as partners, acknowledging both their knowledge and their limits. For families, building peer support networks and for carers individually, permission to step back—are keys to sustainability.

Ultimately, meaningful mental health care must be rooted in shared responsibility, communal support, and flexible, compassionate boundaries. Only then can carers continue to support their loved ones not just out of necessity, but out of a place of balance, health, and hope.


Resources for Mental Health Carers

  • Carers UK: Offers a wide range of advice and community forums for carers.
  • Mind: Provides specific support on mental health caring, advocacy, and rights.
  • Rethink Mental Illness: Campaigning and advice for families and carers.
  • Local Carer Centers: Contact your local authority or NHS Trust for groups and training.
  • Peer Support Networks: Consider informal groups or online forums for shared experience and validation.

If you are a carer, professional, or someone with lived experience: remember, caring is both a gift and a challenge. Prioritize your own well-being as part of the journey. The health of the whole community depends on supporting you too.

South West London Mental Health carers group update for March 2025

Celebrating Mental Health Carers: Building Stronger Connections in Southwest London

By Matthew McKenzie | April 2025

Mental health carers play a vital, often unseen role in supporting loved ones through some of life’s most difficult challenges. At the SW London Mental Health Carer’s Group, we’re creating a space where carers can connect, learn, and feel empowered.

The forum is faciliated by Matthew McKenzie and Ava, although members of the group are encouraged to facilitate to develop carer empowerment.

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Supporting Unpaid Carers: Greenwich Carers Forum – Mental Health Event

On Wednesday 26th March, I had the pleasure of attending and representing Carers UK along with Greenwich Carers MH carers grouos. This was at the Greenwich Carers centre – Carers Forum – Mental Health event.

The event was held in the building and then in a beautiful garden setting surrounded by passionate individuals and organisations all focused on supporting unpaid carers. As someone who’s deeply involved in carer advocacy, this was more than just an information stall, it was a moment to connect, empower, and share resources that can make a real difference in someone’s life.

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