Tag Archives: carer mental health

Speaking as a Carer: Reflections from the Carers’ Wellbeing Conference, London

By Matthew McKenzie

I’ve spoken at many events over the years, but standing in a room full of carers always is a great experince differently. The room filled with lived experience, this time paid and unpaid carers carrying invisible weight of caring stories that rarely get space.

The Carers’ Wellbeing Conference in London, organised by Carers’ Mind CIC, was a moment where carers were allowed to be people first.

The event was hosted at The Abbey Centre, a welcoming community venue in Westminster that provides vital space for local groups, charities, and events focused on wellbeing, inclusion, and social support.

CarersMind CIC is a community-interest organisation dedicated to improving the wellbeing, visibility, and support of both paid and unpaid carers. Through accessible events, practical training, and open conversations about mental health, CarersMind CIC creates safe spaces where carers are recognised as individuals

The Impact of Caring on Mental Health

When I was invited to speak about “The Impact of Caring on Mental Health and What Actually Helps”, I didn’t hesitate. Caring has shaped every part of my adult life. It has taught me empathy, patience, advocacy, but it has also exposed me to burnout, trauma, guilt, and long stretches of isolation.

Too often, carers are spoken about rather than with. This conference made a conscious effort to centre carers’ voices, not as an afterthought, but as expertise.

The Room Told Its Own Story

At the conference, there was no pressure to “cope better” or “be more resilient” without acknowledging the cost. Instead, there was honesty.

Carers spoke about:

Burnout that creeps in quietly
Guilt for needing rest
The emotional toll of long-term responsibility
Feeling unseen by systems that rely on them

These were truths that deserved to be heard without judgement.

What Claire Shelton Shared at her session

Claire spoke openly about how caring impacts mental health carers over time, not just during moments of crisis. she talked about trauma that doesn’t announce itself, about stress containers that overflow slowly, and about how carers often normalise distress because “there’s no other option.”

Most importantly, she focused on what actually helps:

Being recognised as a carer both formally and emotionally
Access to peer support, not just professional services
Practical tools that reduce isolation
Boundaries that protect carers’ wellbeing without guilt

One resource Claire highlighted was the Hub of Hope, because carers need access to support that doesn’t require jumping through endless hoops. These matter not because they fix everything, but because they return a small amount of control to people who’ve lost a lot of it.

What I Shared in my session

In my session, I spoke from lived experience about the long-term impact of caring, shaped deeply by my role as a carer for my mother. I shared how caring is rarely defined by single moments of crisis, but by the gradual, cumulative pressure that builds over time. This includes the emotional labour, the constant vigilance, and the way stress and trauma often go unrecognised because caring simply becomes “what you do.”

I reflected on how caring for my mother affected my mental health, identity, and sense of self. This experience led me to speak about carers’ rights the right to be recognised as a carer, to be involved in decisions, to access support, and to protect one’s own wellbeing without guilt or fear of judgement.

Most importantly, I focused on what actually helps:

Being identified and recognised as a carer, both formally and emotionally
Understanding and exercising carers’ rights
Access to peer support grounded in shared lived experience, not only professional services
Practical tools that reduce isolation and complexity

The Power of Being in the Same Room

One of the most powerful moments wasn’t during my talk it was during the conversations that followed. Carers sharing strategies with each other. Nodding in recognition. Saying, “I thought it was just me.”

That’s the quiet power of events like this. They remind carers that their experiences are valid, shared, and worthy of space.

A Collective Effort

It was a privilege to share the day with:

Claire Shelton, who spoke with clarity and compassion about resilience, stress management, and boundaries
Klivert Jabea, who brought warmth, insight, and a strong message that self-care is not a luxury
The organisers at Carers’ Mind CIC, who created an environment that felt safe, inclusive, and genuinely carer-focused

This conference was about acknowledging reality and that’s where real wellbeing work begins.

Leaving with Hope and Responsibility

I left the Abbey Centre reminded of why this work matters. Carers are holding together families, communities, and systems often at great personal cost. Supporting carers isn’t optional. It’s essential.

Resources and Support for Carers

If you are a carer and are looking for support for your wellbeing, mental health, or caring role, the following resources were highlighted or reflected in discussions during the conference:

Hub of Hope — https://hubofhope.co.uk
A free, UK-wide mental health support database that helps carers find local and national services quickly, without needing to navigate complex systems. It is particularly useful for carers who may not know where to start or who feel overwhelmed by traditional referral pathways.
CarersMind CIC — https://carersmind.co.uk/
A community interest company focused on improving carers’ mental health and wellbeing through events, training, and open conversations that centre lived experience. Their work creates spaces where carers feel recognised, heard, and supported.
Carers UK — https://www.carersuk.org/
Provides information on carers’ rights, benefits, assessments, and practical guidance for unpaid carers across the UK.
Mind — https://www.mind.org.uk/information-support/helping-someone-else/carers-friends-family-coping-support/
Offers mental health information, helplines, and local services, including support relevant to carers experiencing stress, anxiety, or burnout.
NHS Carers Support
Local NHS and local authority carers services can offer carers’ assessments, signposting, and practical support. Availability varies by area, but carers have a right to request an assessment.
Rethink Mental Illness – Carers Hub — https://www.rethink.org/advice-and-information/carers-hub/
Information and guidance for carers supporting someone with mental illness, including rights and practical support.

Understanding Care Guilt and Shame in Culturally Tight-Knit Communities

By Matthew McKenzie

Caring for someone with long-term mental illness is a profound act of love and responsibility, just as i cared for my mother, but it is also fraught with emotional complexities, especially within culturally tight-knit communities. The experience of unpaid carers, those who provide care without financial compensation, can be shaped by powerful cultural expectations, traditions, and social pressures. These factors often lead to hidden challenges such as guilt and shame, which can create barriers to seeking help and support.

This blog post which is a transcript of my video explores the intricate dynamics of care guilt and shame, drawing on my insights as facilitator of the National Ethnic Mental Health Care Forum.

While the focus often falls on ethnic minority carers, many of the themes discussed I feel are universal, affecting unpaid carers from all backgrounds. However By examining the cultural ideals, emotional burdens, and systemic challenges faced by carers, we can better understand how to support them and promote positive change in mental health care.

The Role of Culture in Shaping the Carer Experience

Family Duty and Community Honor

In many tight-knit communities, caring for a family member is seen as a moral duty and a source of honor. The expectation is clear: “We look after our own.” This deeply rooted tradition fosters strong family bonds and a sense of belonging. The carer’s role is often defined by values handed down through generations, reinforcing the idea that caring is not just a responsibility but an essential part of one’s identity.

However, these cultural ideals can also create significant challenges. The notion that the “perfect carer never complains or needs help” sets an unrealistic standard, making it difficult for carers to express their struggles or seek support. Weakness is discouraged, and the pressure to cope without showing strain is especially pronounced among men, who may feel compelled to “man up” and avoid displaying vulnerability.

Keeping Illness Within the Family

Another common theme is the tendency to keep issues of ill health, particularly mental illness, within the family or community. This approach is often seen as a way to protect the family’s reputation and maintain social cohesion. Religious and cultural beliefs may further reinforce the idea that problems should be addressed privately, sometimes through prayer or spiritual practices, rather than seeking external help.

While these traditions can provide comfort and a sense of solidarity, they can also lead to isolation and prevent carers from accessing the support they need. The fear of gossip, judgment, or being seen as failing in one’s duty can be overwhelming, especially when mental health is stigmatized or misunderstood within the community.

The Emotional Weight of Caring: Guilt and Shame

How Guilt Creeps In

Guilt is a pervasive emotion among carers, particularly when cultural norms dictate that they should be able to handle all challenges alone. The demands of caring often mean missing out on community events, family gatherings, or social obligations. Community leaders or members may notice these absences and interpret them as letting the community down, adding to the carer’s sense of guilt.

This guilt can manifest in several ways:

Resentment and Frustration: Carers may feel frustrated with themselves or the person they are caring for, leading to emotional strain and potential conflict.
Personal Guilt: The belief that needing a break or personal time is selfish can prevent carers from prioritizing their own well-being, even when burnout is imminent.
Fear of Judgment: In large families or communities, the expectation to manage alone can be overwhelming. Carers may worry about being judged or seen as failing in their role.

The Catch-22 of Self-Care

The need for personal time and self-care is undeniable, yet carers often feel trapped in a catch-22. Taking time for themselves is viewed as selfish, but neglecting their own needs can have detrimental effects on their mental and physical health. The pressure to uphold cultural ideals and avoid showing weakness makes it difficult to break this cycle.

In some communities, there may not even be a word for “carer”—it is simply assumed that family members will step in as needed. This lack of recognition further compounds the challenges, as carers struggle to articulate their needs or seek validation for their efforts.

The Impact of Shame and Stigma

Saving Face and Avoiding Help

Shame is closely linked to guilt, and both emotions can prevent carers from reaching out for help. The desire to “save face” is strong in many communities, where reputation and social standing are highly valued. Admitting to struggles or accepting support may be seen as a sign of weakness or failure, leading carers to reject offers of assistance from mental health services or outreach programs.

Internalized comments such as “this is your duty,” “you must put up a front,” or “we don’t put family in care” reinforce the belief that seeking help is unacceptable. The fear of gossip and misunderstanding is real, especially in communities where mental health is poorly understood or lacks a cultural vocabulary.

Religious and Cultural Barriers

Religious identity can also play a role in shaping attitudes toward mental health and caring. In some faith-based communities, there may be little space for open discussion about mental illness, and spiritual solutions may be favored over professional support. This can create additional barriers for carers, who may feel unsupported or misunderstood by both their community and the wider mental health system.

Systemic Challenges: Inequalities in Mental Health Care

The Patient Care Race Equality Framework (PCREF)

Recognizing the unique challenges faced by minority carers, NHS England has developed the Patient Care Race Equality Framework (PCREF). These set of policies aims to tackle inequalities in mental health care, particularly for ethnic minority groups. The framework emphasizes the importance of breaking down guilt and shame, promoting better outcomes for minority communities, and ensuring that carers’ voices are central to service design and decision-making.

However, systemic barriers persist. Minority carers may be reluctant to engage with mental health services due to fears of poor outcomes, discrimination, or further isolation. The double tragedy is that those who need support the most are often the least likely to receive it, as both community and systemic factors conspire to keep them from seeking help.

The Importance of Carers’ Voices

A key focus of the National Ethnic Mental Health Care Forum is to ensure that carers’ voices are heard and valued. Too often, the emphasis is placed solely on patients or those with lived experience, overlooking the vital role that families and carers play. Guilt and shame can stop carers from engaging with services, making it essential for mental health systems to recognize and address cultural barriers.

Breaking the Cycle: Towards Better Support and Outcomes

Engaging with Communities

To break the cycle of guilt and shame, it is crucial to engage directly with communities. This means attending religious and cultural gatherings, listening to minority carers and patients, and understanding the specific struggles they face. Education is key!! both for carers and for mental health professionals. Training staff to appreciate community values and avoid assumptions about disengaged carers can help foster trust and collaboration.

Creating Safe, Non-Judgmental Spaces

Safe spaces where carers feel invited and heard are essential. These settings should be non-judgmental and designed to encourage open dialogue. Just like my Ethnic carer forum. Co-production, where patients and carers are involved in designing and delivering services and can help ensure that support is tailored to the needs of diverse communities.

Promoting Positive Role Models

Just as I mentioned when I spoke at the North East London NHS PCREF event, I feel that Role models play a powerful role in challenging stigma and inspiring change. Mental health trusts and systems should promote positive examples of carers who have reached out for help and benefited from support. Sharing stories and experiences can help others see that seeking help is not a weakness, but a strength.

Self-Care as Strength

Promoting self-care as a strength, rather than a weakness, is vital. Carers need to recognize that it is okay to ask for help and take time for themselves. Engaging with community leaders and faith networks can help change attitudes and reduce stigma, using trusted voices to advocate for better understanding and support.

The Path Forward: Building Inclusive Mental Health Services

Co-Production and Service Design

Including carers in service design and decision-making is essential for building inclusive mental health services. By putting carers at the center of policy and practice, systems can better address the unique challenges they face and promote positive outcomes for all.

Education and Awareness

Ongoing education and awareness-raising are critical. Carers, communities, and professionals must work together to challenge stigma, promote understanding, and create environments where everyone feels supported.

The Power of Conversation

Ultimately, breaking the cycle of care guilt and shame requires open conversation and a willingness to learn from each other. By sharing experiences, listening to diverse voices, and fostering empathy, we can build stronger, more inclusive communities and mental health systems.

Conclusion

Care guilt and shame are complex, deeply rooted issues that affect unpaid carers across culturally tight-knit communities. The emotional weight of caring, compounded by cultural expectations and systemic barriers, can lead to isolation, burnout, and reluctance to seek help. Addressing these challenges requires a multifaceted approach engaging with communities, promoting positive role models, creating safe spaces, and ensuring carers’ voices are central to service design.

By working together to challenge stigma and promote understanding, we can support carers in their vital role and build mental health services that truly meet the needs of all. The journey is ongoing, but with awareness, education, and compassion, positive change is possible.

Caring for someone with mental illness? Check out our Ethnic carer forum. Dates shown below.

Ethnic mental health Carer Forum Update June 2025

By Matthew McKenzie – Carer activist, poet and author

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

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

Summary

Carer Support Network Expansion Discussion

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

Continue reading →

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.

Continue reading →

The Hidden Struggles of Unpaid Carers: Understanding and Overcoming the 20 Worst Challenges

By Matthew McKenzie

Unpaid carers are the unsung heroes of our society, providing essential support to loved ones with long-term or terminal illnesses, disabilities, or mental health conditions. Despite their vital role, they often remain invisible, unsupported, and overwhelmed by the weight of their responsibilities. As Carers Week 2025 approaches, it’s crucial to shine a light on the realities unpaid carers face and explore practical solutions to help them navigate their journey.

Drawing from lived experience and insights gathered from carer support groups, this article delves into the 20 most significant challenges unpaid carers encounter. It also offers actionable advice and resources to empower carers and those who wish to support them.

To watch the detailed video lecture, see below.

The Backbone of Society: Unpaid Carers in Context

There are an estimated 5 to 7 million unpaid carers in the UK alone, with millions more worldwide. These individuals save health and social care systems billions each year, yet their contributions are often undervalued or overlooked. The role of an unpaid carer is demanding, complex, and frequently misunderstood by those who have never walked in their shoes.

Continue reading →

Lead with Love: Stress Awareness Month 2025

Embracing Stress Awareness Month by Matthew McKenzie

Stress Awareness Month, observed every April, serves as a powerful reminder to pause, reflect, and take charge of our well-being.

To watch the awareness video, click below.

In 2025, the theme for Stress Awareness Month is “Lead with Love,” which encourages us to approach both ourselves and others with kindness, compassion, and acceptance. This movement is orchestrated by the Stress Management Society, a nonprofit organization founded in 2003 dedicated to helping individuals and organizations manage stress, improve well-being, and build resilience.

The Importance of Stress Awareness Month

Continue reading →

“Listen to Me” – A Carer’s Plea Turned into Song

Caring for someone with a mental illness is an emotional, often isolating experience. Unpaid carers—whether they are family members, friends, or loved ones—carry immense responsibility, yet their voices can feel unheard, especially within the healthcare system.

One of my poem’s “On Being Heard” taken from my book The Poetry Book of Mental Health Caring, captures this struggle with raw honesty.

Continue reading →