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Strengthening Mental Health Nursing Through Lived Experience, Co-production and Psychosocial Interventions – 2nd RCN PSI Alumni Conference 2026

By Matthew McKenzie BEM FRSA – Unpaid Carer, Author, Poet and Mental Health Carer Advocate

Introduction – Bringing Mental Health Nurses, Carers and Lived Experience Together

On Monday 2 November 2026, I had the pleasure of attending and contributing to the Royal College of Nursing (RCN) Psychosocial Interventions (PSI) Alumni Conference.

The conference brought together mental health nurses, PSI course alumni, educators, researchers, facilitators, people with lived experience and unpaid carers from different parts of the country.

For me, it was another valuable opportunity to contribute the experiences of unpaid carers and families to the development of mental health nursing.

Having spent many years supporting my mother through her experiences of schizophrenia, alongside my responsibilities involving my two autistic brothers, I understand how important compassionate, skilled and knowledgeable mental health professionals can be to families.

I was particularly pleased to participate in the conference’s lived-experience co-production panel, where we explored how working relationships develop between professionals, patients and carers, and why meaningful involvement must extend beyond simply inviting people to share their stories.

Throughout the day, I was reminded that mental health nursing is not only about clinical interventions, assessments or medication. It is also about understanding the person, their relationships, their cultural background and the people supporting them outside services.

Understanding Psychosocial Interventions and Their Importance

Psychosocial interventions provide mental health nurses with approaches and skills to understand and support people experiencing mental health difficulties.

These approaches encourage practitioners to think beyond symptoms and diagnoses, considering the psychological, social, emotional and environmental circumstances affecting an individual’s wellbeing.

The RCN PSI programme is a nine-month professional development course designed to strengthen registered mental health nurses’ therapeutic skills and evidence-informed practice.

An important message throughout the conference was that nurses should have the confidence and skills to develop therapeutic relationships, recognise trauma, engage families and help individuals participate in decisions about their care.

This particularly interests me as a carer advocate.

Families may spend years supporting someone through periods of crisis, admission, discharge and recovery. Yet their knowledge and observations are not always fully recognised within services.

PSI offers an opportunity to strengthen that relationship between the person receiving care, their family and the professionals supporting them.

I was encouraged by the number of nurses attending who were passionate about improving their practice and sharing what they had learned with colleagues.

Opening Reflections – Listening to Lived Experience

The opening session placed lived experience at the centre of the conference.

Hannah Cadogan reflected on her involvement in lived-experience work and the importance of psychosocial approaches in understanding experiences that people may struggle to communicate.

She discussed a collaborative quilt created through the involvement of patients, staff and carers associated with Castle Hospital.

The quilt provided a powerful example of how creativity can bring different people together.

It also demonstrated that people do not always communicate their experiences through conversation alone. Sometimes art, creative expression and shared activities provide different opportunities for people to explain what they are feeling.

This particularly resonated with my own interests in poetry and creative wellbeing.

Through the poetry groups I facilitate for unpaid carers, I have seen how creative expression can help people communicate emotions that may otherwise remain hidden.

Another opening contribution came from Sinead, a bereaved parent who spoke movingly about her daughter and the importance of services understanding the different aspects of a person’s life.

She highlighted the value of bringing together families, communities and professionals who each hold different knowledge about an individual.

Her contribution was a reminder that no single professional, service or family member necessarily understands every aspect of someone’s experiences.

It is through listening and collaboration that a fuller picture can emerge.

For me, this reinforced the importance of meaningful co-production and involving families before difficulties escalate.

Learning From a Personal Recovery Journey

Ashley Knight, a PSI alumnus, shared the experiences of patient whose journey involved neurocysticercosis, neurological complications and a period of severe psychosis that resulted in psychiatric hospital treatment.

The presentation explored how physical and mental health problems can overlap, and why assumptions about someone’s condition can have serious consequences.

What particularly interested me was Lowri’s reflections on what had helped her recovery.

She valued professionals who made time to sit with her, listened to her concerns and recognised who she had been before becoming unwell.

She also highlighted the importance of honest communication, avoiding premature conclusions and including her family in discussions, particularly when she was unable to participate fully herself.

This was a significant learning point.

Sometimes carers and families are given limited information or find themselves excluded from discussions, even when they have been supporting someone for many years.

While confidentiality remains important, services must also consider how they can communicate effectively and appropriately with families.

Listening, compassion and taking time to understand someone’s circumstances should never be underestimated.

My Contribution to the Lived-Experience Co-production Panel

One of the most meaningful parts of the conference for me was participating in the co-production panel alongside other lived-experience contributors, including Simon and Antonia, with Catherine helping guide the discussion.

The panel explored how partnerships develop, what builds trust and how involvement contributes to both personal and professional growth.

I spoke from my experiences of being an unpaid carer and from my wider involvement in mental health carer forums, service development and training.

For many years, I have witnessed the pressures experienced by families supporting relatives with complex mental health needs.

I have also recognised the considerable pressures experienced by mental health nurses, particularly during periods of increasing service demand and limited resources.

My message was that carers and professionals need opportunities to learn from one another.

Nurses bring clinical expertise, therapeutic skills and professional knowledge.

Carers bring observations and experiences gained from supporting relatives in everyday life, often over many years.

Both forms of knowledge are important.

Building trust through involvement

During the panel, we discussed the importance of developing relationships beyond traditional professional boundaries.

Trust cannot simply be expected because someone holds a professional role.

It develops when people are listened to, treated with respect and given opportunities to contribute.

For carers, this may mean being invited into discussions about care planning, participating in service improvement or contributing to the training of mental health professionals.

I explained that being involved in organisations and learning from professionals has contributed greatly to my own understanding of mental health services.

I am continually learning about the challenges nurses face, the approaches they use and the developments taking place within mental health care.

In turn, I try to share that knowledge with other families and unpaid carers through my forums, presentations, blogs and wider advocacy work.

Supporting professional growth through shared learning

Another question explored how involvement had supported recovery or professional growth.

I reflected on the value of learning from others and being part of organisations that are helping shape mental health services.

Although my experiences as a carer have involved considerable challenges, they have also given me opportunities to contribute to training, service development and national discussions.

I believe that meaningful involvement can encourage other carers to recognise that their experiences are valuable.

When people with lived experience see others contributing to conferences, workshops and professional education, it can demonstrate that their voices matter.

This should not be about providing a personal story and then being forgotten.

It should be about developing continuing partnerships in which carers and people with lived experience can influence how services operate.

What Makes Co-production Successful?

An audience member asked the panel for advice about establishing groups and encouraging people to participate.

This was a question I found particularly interesting because I facilitate several mental health carer forums and understand the difficulties involved in building participation.

I explained that it is important to listen to carers who are passionate about change and encourage those who wish to work constructively with others.

People often come to forums carrying years of frustration or disappointment about services.

Their experiences should be recognised, but there must also be opportunities to turn concerns into learning and practical improvements.

I also reflected on the importance of persistence.

A group may begin with only a handful of participants. Over time, as people hear about the work being undertaken and begin to see its value, further involvement can develop.

Other panel members highlighted the importance of psychological safety, recognising people’s vulnerability and ensuring that nobody’s contribution is treated as less important than another’s.

There was also an important reminder that success should not simply be measured by attendance numbers.

A small group of committed participants can still make a meaningful difference.

Another valuable suggestion was to involve carers or people with lived experience as co-facilitators rather than expecting one professional to lead every aspect of a group alone.

For me, this reflects the fundamental principle of co-production.

Co-production is not simply asking people for their opinions. It is about sharing responsibility, recognising different forms of expertise and working together towards meaningful change.

Networking With Mental Health Nurses and Sharing Carer Resources

Following the panel, I had opportunities to speak individually with several conference participants.

One particularly valuable conversation was with Hazel, a mental health nurse and PSI facilitator involved in teaching about working with families.

We discussed how her educational work had developed through contributions from parents and carers.

Rather than limiting participation to personal testimonies, she described how carers had helped design learning activities, provide feedback to students and contribute to reviewing the teaching module.

I was particularly encouraged by this approach.

I explained that one of the next stages of meaningful involvement should be enabling carers to contribute not only their stories but also to teaching, evaluating learning and shaping how courses develop.

This gives carers a stronger role in professional education.

Moving beyond telling a story

Sharing lived experience can be powerful, but there is a risk that organisations become too dependent on asking carers to repeatedly describe difficult experiences.

I believe there are further opportunities for carers to contribute through:

Co-designing learning materials and training sessions.
Participating in role-play and simulated assessments.
Giving structured feedback to professionals.
Reviewing educational programmes and service developments.
Supporting evaluation and identifying areas for improvement.

Our conversation reinforced how valuable this approach can be.

I also shared information about my Caring Mind Blog, my books, poetry and videos, including my work on the Patient and Carer Race Equality Framework (PCREF).

We discussed my recent involvement in the Sussex PSI event and how blogging can help promote good practice, share learning and encourage other organisations to become involved.

It was encouraging to hear about further conference activity being developed and the possibility of continuing these conversations.

From Voice to Impact – Addressing Inequality in PSI Training

One of the workshops I attended was titled From Voice to Impact, facilitated by Cheryl Mbando and colleagues.

This session explored representation and the barriers affecting participation in PSI professional development, particularly among nurses from Black and minority ethnic and Global Majority backgrounds.

The discussion was particularly relevant to my work around PCREF and tackling racial inequalities in mental health services.

The workshop explored why some groups of staff may have fewer opportunities to participate in professional development, despite the value that training can bring to both staff and patients.

Participants discussed several potential barriers, including limited awareness of courses, unequal access to training opportunities, lack of support from managers, staffing pressures, unclear information about benefits and insufficient representation in senior or mentoring roles.

It was interesting to hear participants share how some had discovered PSI training almost by chance, rather than through a consistent process of encouraging professional development.

The workshop also explored how organisational cultures and assumptions can influence who is supported to undertake additional training.

Moving towards practical solutions

Rather than simply identifying barriers, participants were encouraged to consider what individuals, teams and organisations could do differently.

Suggestions included clearer communication about training opportunities, better support for staff undertaking courses, stronger leadership commitment and sharing learning across teams.

Another important suggestion was embedding PSI knowledge and competencies into organisational structures, rather than treating the training as an isolated opportunity.

I was particularly interested in the discussion about representation.

When organisations want to improve culturally responsive mental health services, they must also consider whether development opportunities are accessible and equitable for the workforce.

A diverse workforce needs equitable opportunities to progress, develop and influence professional practice.

There is also an important connection with PCREF.

Improving racial equity in mental health care requires attention not only to the experiences of patients and carers, but also to how staff are supported, trained and valued.

What Does the PSI Evaluation Tell Us?

Another significant session focused on an independent evaluation of the RCN PSI programme.

The presentation explored how the course had influenced nurses’ confidence, professional identity, attitudes towards evidence-based practice and experiences of learning.

The evaluation included survey responses from 82 participants, alongside a smaller number of qualitative interviews.

The findings presented were encouraging.

Participants reported high levels of satisfaction with their learning and confidence in the skills developed through the course.

The evaluation also identified an important relationship between openness to evidence-based practice and reported confidence.

Qualitative feedback suggested that the course helped some nurses reconnect with their professional identity and reminded them of the value of therapeutic relationships and psychologically informed care.

However, the presentation also highlighted limitations.

The findings relied partly on self-reported experiences and did not establish long-term improvements in patient outcomes.

Participants also raised concerns about whether newly developed skills could be sustained without appropriate organisational support.

This is an important distinction.

Training can strengthen knowledge and confidence, but professionals also need opportunities to apply what they have learned.

From a carer’s perspective, I would welcome future evaluation that also explores what patients and families notice when nurses receive PSI training.

Are families more involved?

Do carers feel listened to?

Are patients better supported to understand their treatment and recovery?

Do services provide more opportunities for therapeutic conversations?

These are some of the questions I believe would help demonstrate the wider impact of PSI.

Making Psychosocial Interventions Sustainable

Further conference discussions examined how PSI could become embedded within everyday mental health services.

Participants explored the responsibilities of individual professionals, clinical teams and organisations.

Examples from Berkshire Healthcare demonstrated approaches to integrating PSI skills into clinical pathways, supervision, mentoring, competencies and staff development.

There was particular discussion about supporting nurses to maintain their skills after completing training.

This included protected time, opportunities to practise therapeutic approaches, clinical supervision and support from senior leaders.

Participants also discussed the value of tailoring training to different services, including inpatient wards, crisis teams and community mental health settings.

I found this particularly important.

The pressures experienced by a nurse working on an inpatient ward may differ from those experienced by someone working in community services.

Similarly, the needs of families can differ depending on the circumstances of their relatives and the support available.

A flexible approach is therefore important, while maintaining the quality of evidence-informed interventions.

The wider message was that responsibility for maintaining PSI skills should be shared.

Nurses must continue developing their practice, but organisations must provide the conditions that make good practice possible.

Looking Beyond the UK – Opportunities for International Collaboration

The conference also considered opportunities to strengthen international connections around psychosocial interventions.

Martin Jones discussed work involving an international psychosocial interventions research network and the potential for greater collaboration between practitioners, academics and other stakeholders.

This was an interesting reminder that many of the challenges affecting mental health services are not unique to the United Kingdom.

Developing relationships between countries may create opportunities to share research, professional learning and examples of effective practice.

It also raises important questions about how psychosocial approaches can be adapted to different cultural and service contexts.

For me, this links to the importance of cultural competency and recognising that people interpret mental health, illness, family responsibility and recovery in different ways.

Mental health practice should always consider those differences rather than assuming that one approach will be appropriate for everyone.

Celebrating Learning, Creativity and the PSI Community

The conference also provided opportunities for participants to share posters, resources and learning from different PSI cohorts.

The networking and exhibition sessions offered space to discuss practice, ask questions and learn about developments taking place across mental health services.

It was encouraging to see how people were sharing their experiences and celebrating the work undertaken through PSI training.

Towards the end of the conference, participants and organisers were recognised for their contributions.

The closing session also brought creativity back into focus through poetry.

One poem explored the experiences of unpaid carers, including the emotional pressures of caring and the importance of nurses recognising carers as individuals with their own needs.

I Am a Carer, Hear My Voice

Poem shared by a carer at the RCN PSI Alumni Conference, 2 November 2026

Am I doing too much? Am I not doing enough?
Am I the only one who finds this so tough?
They ask me how they are but forget about me,
As the cracks start to show, I’ve forgotten how to be.

The sleepless nights, the endless fear,
I wonder what would happen if I wasn’t here.
I know they really need me, there’s too much at stake,
But what I’d give for just five minutes, what I’d give for a break.

Here we are again in that waiting room,
Hoping that recovery may come soon.
I’m left here alone as they whisk them away,
To get them some help. It’s Groundhog Day.

Why does no one ask? Can’t they see my pain?
Can I keep them safe? They ask me again.
So off we go home, tears fall in my eyes,
I try to be positive but it feels like lies.

We return the next day but something’s new,
As a nurse kindly asks, how are you?
I finally feel seen, it suddenly seems fairer,
That finally I was more than somebody’s carer.

The nurse looked into my eyes and with a reassuring smile,
Encouraged me to chat about me for a while.
The tears came soon after and the truth began to flow,
I feel trapped and helpless with nowhere to go.

They listened with understanding, respected my point of view,
They could see the wider picture of what us carers do.
So all of you nurses in all walks of life,
Please look for those carers, they’re hiding their strife.

They need your compassion as much as patients do,
Their job is 24-7, please acknowledge what they do.
There’s such power in a smile and hope with a listening ear,
Don’t make them invisible. Say we see you. We’re here.

Reproduced with the poet’s permission.

Another reflected on mental health nursing and how PSI learning could strengthen compassion, professional identity and therapeutic relationships.

To Nurse With My Heart

Poem shared by a mental health nurse at the RCN PSI Alumni Conference, 2 November 2026

Between the high-pressure shifts and the ticking clock,
Both brain lights can fracture and double doors lock.
I hold fast to a promise I swore from the start,
To lead with my mind but to nurse with my heart.

For every soul walking in from the rain
Was once someone’s child, now in crisis or pain.
I measure my care by a simple clear line:
How will I want you to treat what is mine?

PSI learning has opened the door
To evidence tools and the science of more.
Psychosocial pathways that listen and guide,
Where the person, not the diagnosis, sits by my side.

It validated all that I felt in my bones,
That healing takes power and no one’s alone.
It gave language to empathy, structure to grace,
And a framework of hope in a chaotic place.

The service goes on, the resources are thin,
We get ready for battle before we begin.
Yet despite every barrier, shortage and strain,
The human connection is what will remain.

So I’ll carry these skills as a shield and a light,
To stand in the gap and to advocate right.
With compassionate hands and a practice made whole,
I will honour the person, the family, the soul.

Reproduced with the poet’s permission.

I found it especially fitting that poetry formed part of the closing reflections.

As someone who uses poetry to raise awareness of mental health caring, inequality and lived experience, I strongly believe creative approaches can provide an important way of communicating messages that might otherwise be difficult to express.

The closing contributions reminded us that compassion, listening and human connection remain essential elements of mental health care.

My Reflections – What Does This Mean for Unpaid Carers?

Leaving the RCN PSI Alumni Conference, I reflected on how far mental health nursing has developed and how important it is that carers continue to be involved in shaping that development.

The conference demonstrated that many nurses are committed to improving the way they work with patients and families.

I also came away with a greater appreciation of the challenges they face.

Staffing pressures, competing responsibilities, limited development opportunities and organisational demands can all affect the time available for therapeutic work.

For families, however, the experience of mental health services often depends on the quality of individual interactions.

A nurse taking time to explain what is happening can reduce anxiety.

A professional listening to a carer’s observations can help build trust.

A family being appropriately involved in discussions can contribute knowledge that might otherwise be overlooked.

And a service that recognises culture, identity and lived experience may be better placed to understand the people it supports.

This is why I believe psychosocial interventions and co-production complement one another.

They both encourage us to see people in the wider context of their lives and relationships.

Conclusion – Learning Together to Make Mental Health Care Better

The RCN PSI Alumni Conference 2026 provided an important opportunity for mental health professionals, carers and people with lived experience to learn from one another.

It demonstrated the value of psychosocial interventions, meaningful co-production, professional development and the importance of maintaining compassionate relationships within mental health care.

I was grateful for the opportunity to contribute to the co-production panel and to hear directly from nurses about their experiences of PSI training.

I was also encouraged by the conversations around inclusion, professional identity, family involvement and the practical challenges of maintaining therapeutic skills within services.

For me, the message is clear.

We need skilled and supported mental health nurses. We need patients and families whose experiences are respected. And we need organisations willing to bring these different forms of expertise together.

When carers and professionals learn from one another, we create opportunities to improve understanding, strengthen relationships and ultimately deliver better mental health care.

My thanks go to the RCN, the PSI organisers and facilitators, fellow lived-experience contributors, mental health nurses, researchers and everyone who made the conference possible.

I look forward to continuing these important conversations and sharing what I have learned with the unpaid carers and mental health networks I work alongside.

National Ethnic mental health Carer Forum : June Update 2026

By Matthew McKenzie – Carer & Chair of the National Ethnic MH carer Forum

The June 2026 National Ethnic Mental Health Carer Forum brought together carers, NHS Trusts, researchers, voluntary organisations and mental health professionals from across England to discuss one shared ambition improving mental health services through genuine co-production with ethnic minority carers.

Matthew reminded delegates that carers develop expertise through lived experience. Supporting a family member with severe mental illness means navigating NHS services, social care, benefits systems and advocacy. These experiences provide knowledge that cannot be learned through textbooks alone.

Opening Presentation

Matthew McKenzie

The Importance of Co-production

Forum Chair Matthew McKenzie opened the meeting by welcoming carers and professionals from across England and reflecting on more than a decade of leading the National Ethnic Mental Health Carer Forum.

Continue reading →

National Ethnic mental health Carer Forum : April Update 2026

If you weren’t able to join us for this month’s online forum, you missed a deeply insightful session packed with research updates and honest conversations. As a carer myself, I know how hard it is to find time for these meetings, so I’ve put together this expanded summary to keep you in the loop on the vital work being done for our community.

Meeting Agenda

Welcome and Intro: The role of the Patient Care Race Equality Framework (PCREF).
Speaker 1: Brenda Hayaka (King’s College London): Findings on ethnic inequalities in healthcare and the new “Interception” study.
Q&A Session: Addressing dementia stigma, medication, and language barriers.
Spirituality & Faith: Insights from Tuulia Castledine (Chaplain at SWLSTG) on recovery and holistic care.
Speaker 2: Becky Forster (University of Southampton): Supporting carers facing harmful or upsetting behaviors.
Local Advocacy: Healthwatch Croydon’s role in gathering carer feedback.
Closing: “Rooted and Growing” (A PCREF poem).

Key Speaker: Brenda Hayaka – The Interception Project

Brenda shared findings from her previous work on ethnic inequalities and introduced her new study on Multiple Long-Term Conditions (MLTCs).

Brenda Hayaka opened her keynote by sharing the heart behind her work on ethnic inequalities in healthcare. Drawing on her previous research, she described how minoritised ethnic patients and their carers often face significant challenges navigating multiple long-term conditions (MLTCs) with little support or recognition. She emphasized that while global interventions exist for conditions like diabetes and depression, there is a notable gap in UK-based research specifically addressing MLTCs in minoritised communities. This “major evidence gap” became the driving force behind her current study, The Interception Project.

What the Research Shows:

Systemic Disadvantage: Minoritized ethnic groups are disadvantaged from the development to the management of multiple conditions.
Poor Continuity of Care: Many experience poor therapeutic relationships with practitioners.
The UK Evidence Gap: While interventions for depression and diabetes exist globally, Brenda found zero studies specifically targeting MLTCs for minoritized groups within the UK healthcare system.

The “Interception” Study:

The Interception Project uses a creative and collaborative method called journey mapping to trace the lived experiences of patients and unpaid carers. Brenda explained that this approach goes beyond merely collecting data: it seeks to identify the pathways people take when seeking help, the barriers they encounter, and the moments where the healthcare system fails them. By listening deeply and reflecting these experiences back to communities, the research provides actionable insights into improving care quality and equity. The study is expanding beyond London to include Coventry and Manchester, recognizing that every community has unique strengths, challenges, and solutions.

Brenda highlighted that a central aim of the project is to co-create actionable recommendations with communities. These recommendations are intended for NHS leaders, commissioners, and policymakers, ensuring that the voices of carers and patients directly inform service design and delivery. She also spoke about the role of trusted community leaders in building access and overcoming barriers such as language differences, mistrust of institutions, and cultural stigma around certain health conditions. Faith communities, she noted, can play a crucial role not only as support networks for participants but also as partners in research, data collection, and advocacy for change.

Throughout her presentation, Brenda emphasized that understanding the journey of carers and patients requires attention to both systemic and relational factors. Minoritised ethnic groups often experience disadvantages in developing and managing multiple conditions, and poor continuity of care can weaken therapeutic relationships with practitioners. By documenting these experiences in detail, the Interception Project aims to fill the evidence gap and provide a roadmap for more equitable, culturally sensitive care. Brenda closed her keynote by reminding attendees that meaningful equity in healthcare begins when previously invisible experiences are recognized and acted upon—a call to transform insight into change.

Spirituality in Care: Forum Introduction by Matthew McKenze

I had the honor of opening the spirituality segment of the forum, emphasizing the vital role that faith and cultural practices play in supporting carers and patients from minoritised ethnic communities. I framed the discussion around the idea that mental health care cannot be fully effective unless it recognizes the whole person, including their spiritual and cultural identity. I highlighted that carers often draw strength, resilience, and meaning from their faith, and that this dimension is frequently overlooked in traditional mental health services.

I encouraged participants to consider spirituality not as an abstract concept, but as a tangible resource that can inform recovery, foster belonging, and enhance coping strategies. By acknowledging spiritual needs, mental health providers can build trust with communities that have historically experienced marginalization or misunderstanding within healthcare systems. I also set the tone for an open and reflective conversation, inviting attendees to share experiences, insights, and challenges related to integrating faith and mental health support.

By positioning spirituality as both a personal and systemic consideration, the forum aimed to explore how services can better engage with faith perspectives in a respectful, inclusive, and practical way. This introduction laid the groundwork for Tuulia Castledine’s keynote, which delved deeper into the spiritual tools and frameworks that support carers and patients in their mental health journeys.

Spirituality in Care: Insights from Tuulia Castledine (SWLSTG)

We were joined by Tula, a Chaplain from South West London and St George’s (SWLSTG), who led a vital discussion on the spiritual dimension of mental health.

Tuulia highlighted that for many carers and patients, faith is not just a personal practice but a framework through which they make sense of mental health crises. Spirituality often provides a lens for understanding why challenges occur and offers a source of hope, helping individuals navigate uncertainty with resilience.

Beyond offering meaning, Tuulia explained that spirituality can serve as a practical tool in recovery. It provides a “language for recovery” that allows carers and patients to express experiences and emotions that might otherwise be difficult to articulate. This sense of connection fosters belonging and strengthens the psychological resources people draw upon when coping with mental health challenges.

Tuulia also stressed the importance of services adopting what she called “spiritual curiosity.” Mental health professionals are encouraged to engage openly with faith perspectives rather than making assumptions or ignoring them. By integrating spirituality into holistic, person-centered care, services can better meet the needs of minoritised ethnic communities.

Finally, Tuulia highlighted a critical concern: when services fail to acknowledge faith, they risk deepening the mistrust that many minority communities feel toward mental health providers. Recognizing and valuing spiritual needs, she emphasized, is not just compassionate—it is a crucial component of equitable care, fostering trust, understanding, and more effective therapeutic relationships.

Summing up Tuulia’s talk

Making Sense of Illness: For many, faith is how they make sense of why a crisis is happening and where they can find hope.
A Tool for Recovery: Spirituality provides a “language for recovery” and can build resilience and a sense of belonging.
Moving Beyond Assumptions: Tula emphasized that services need to show “spiritual curiosity” and include faith as part of holistic, person-centered care.
The “Mistrust” Gap: When services ignore faith, it can deepen the mistrust minority communities feel toward mental health providers.

Carer Voice: Questions & Feedback

The Q&A session was one of the most powerful segments of the forum, offering an unfiltered view of the real-world barriers faced by carers and minoritised ethnic communities. Participants shared candid experiences, highlighting gaps in current mental health support and pressing for practical solutions.

A professional opened the discussion by addressing the critical issue of language and access. She pointed out that many research projects and healthcare initiatives fail because they do not allocate adequate resources for language interpretation or accessibility for disabled individuals. Without these provisions, vital services and studies inadvertently exclude those who may benefit most, leaving carers and patients marginalized.

A carer contributed a particularly thought-provoking critique regarding medication versus conversation. He challenged the system on why Black men are often prescribed stronger medication for longer periods rather than being offered meaningful dialogue and psychosocial support. This raised an important conversation about the need for culturally sensitive approaches to treatment that value listening, understanding, and relationship-building alongside pharmacological intervention.

The unpaid carer also highlighted the challenge of dementia stigma within older generations of minoritised communities. He described how deeply ingrained cultural perceptions can make it difficult for families to seek early support or even acknowledge the condition, creating additional stress for carers. The discussion emphasized that tackling stigma requires both education and culturally attuned engagement, alongside support networks that respect the values and experiences of carers and patients.

A mental health professional from another mental health NHS trust added a vital perspective on community engagement and trust-building. He emphasized that carers often encounter inconsistent communication from services and a lack of culturally informed support, which can leave families feeling isolated and unsupported. He urged healthcare providers to work more closely with community leaders, faith groups, and carers themselves to co-design services that truly respond to the specific needs of minoritised ethnic communities.

Overall, the feedback session underscored that systemic improvements must be informed by the lived experiences of carers. Their insights illuminated the gaps between policy, research, and practical care, reminding the forum that real change is rooted in listening to and amplifying these voices.

Support for Carers in Crisis

Becky Forster introduced a deeply important new study funded by Marie Curie, focusing on carers who find themselves in extremely challenging and sometimes frightening situations. The research aims to better understand the experiences of carers who have faced harmful, aggressive, or abusive behaviors from the person they care for, particularly at the end of life. Becky emphasized that these situations are often overlooked in traditional guidance, leaving carers without the support or strategies they need to cope safely and effectively.

The study seeks to gather real-life experiences from carers, acknowledging that their insights are invaluable in shaping practical and compassionate guidance for healthcare providers. Becky explained that the goal is not only to document these difficult experiences but also to translate them into actionable tools and recommendations for the NHS, ensuring that carers receive timely support, protection, and training when dealing with complex end-of-life care scenarios. By centering the voices of those who have lived through these crises, the project hopes to reduce isolation, increase safety, and enhance the wellbeing of carers facing some of the most emotionally and physically demanding circumstances.

Becky encouraged attendees to participate and share their stories, reassuring them that contributions would remain confidential and that their experiences could directly influence policy and practice. This initiative highlighted the critical need for systemic recognition of carers’ emotional and practical needs, ensuring that they are not left to navigate trauma and stress alone. The session reinforced that understanding, guidance, and compassionate support are essential for carers’ resilience and for providing safe, dignified care to those at the end of life.

Croydon Healthwatch

We concluded the forum with an important reminder from Anna of Healthwatch Croydon, who emphasized that anyone in England has the right to provide anonymous feedback on their care. Anna highlighted that this is more than a formal process, it is a powerful tool for carers, patients, and communities to have their voices heard. By sharing experiences of both excellent and inadequate care, individuals can directly influence how services are shaped, highlight gaps in provision, and push for improvements where they are most needed.

Anna also underscored that feedback plays a crucial role in holding policymakers and healthcare leaders accountable. When carers and patients report their experiences, patterns of inequality, or systemic barriers, it creates evidence that decision-makers cannot ignore. This feedback is particularly vital for minoritised ethnic communities, where historical mistrust and underrepresentation have often left issues unaddressed. She encouraged all attendees to see feedback not as a bureaucratic exercise, but as an instrument of empowerment, helping to drive change at both local and national levels.

I closed the session with my poem “Rooted and Growing,” celebrating that we don’t have to lose our identity to get the care we deserve.

Matthew McKenzie

Mental Health Carer & Forum Chair

Involve Kent Carers’ Forum – 25th February 2026

By Matthew McKenzie

On 25th February 2026, I had the privilege of speaking at the Carers’ Forum hosted by Involve Kent.

Involve is a voluntary sector infrastructure organisation in Kent that supports unpaid carers by providing information, advice and practical help to make caring more manageable.

They organise regular carers’ forums and events where carers can meet each other, access specialist support services, hear from guest speakers on issues like benefits, legal rights and wellbeing, and contribute their lived experience to local planning and decision-making. Involve also connects carers with tailored resources, signposts to relevant services across health, social care and community sectors, and advocates for carers’ voices to be heard by policymakers and service providers

The forum ran from 10:30am to 1:30pm and brought together unpaid carers from across Kent to connect, learn and have their voices heard.

It was my second time speaking at this forum, and once again I was struck by something powerful: the room was full. That might sound simple, but in the world of unpaid caring which can often feel isolating and invisible a full room means solidarity. It means people are choosing, despite exhaustion and competing demands, to show up for themselves and each other.

Arriving and the atmosphere

From the moment I walked in, there was a real sense of warmth. Information stands lined the hall Involve, Citizens Advice, mental health services, energy advice, leisure services and more. Tables were covered in leaflets, conversations were already flowing, and carers were reconnecting with familiar faces.

The purpose of the forum was clear:

To enable those caring unpaid for an adult family member, partner or friend to meet, gain information about services in their community and have their voices heard .

That last part to have their voices heard is what resonated most with me.

It was also good to see Carer leads from Cygnet Maidstone engaging with carers in the community of Kent.

My talk: Caring for someone with a mental health diagnosis

I spoke about caring for someone with a mental health diagnosis and the Patient and Carer Race Equality Framework .

As many know, I cared for my mother who lived with schizophrenia, and I now support a close friend who lives with personality disorder and addiction challenges. I don’t speak as a clinician. I spoke as someone who has sat in GP waiting rooms, on inpatient wards, in crisis meetings, and at home during those “screaming silences” that carers know too well.

I shared:

The confusion I felt when I didn’t even realise I was a “carer”
The frustration of confidentiality barriers
The loneliness of not being listened to
The emotional exhaustion that comes from constantly firefighting crises

I then shared a poem to promote carers rights

But I also shared something equally important: growth, advocacy and solidarity.

I encouraged carers to:

Educate themselves about the condition they are supporting
Learn the difference between symptoms and personality
Understand triggers
Forgive themselves for mistakes
And most importantly, look after their own wellbeing

One message I always return to was – You cannot pour from an empty cup.

I also spoke about The Patient Carer Race Equality Framework

It exists because there is clear evidence of:

Disproportionate detentions under the Mental Health Act
Poorer outcomes for Black and minority ethnic patients
Higher levels of distrust between communities and services
Carers feeling unheard or excluded

I spoke about how minority carers can face:

Cultural misunderstandings
Language barriers
Stigma around mental health within communities
Fear of services due to past discrimination
A lack of culturally appropriate support

Discussion tables: Carers influencing change

After my talk, Clara from Involve led discussions feeding into Kent’s Health Needs Assessment for carers. Carers were asked:

How do you recognise when it’s time to ask for help?
What causes burnout?
What would a carer-friendly community look like?

These wete not token questions. Staff took notes (without identifying details) so carers’ lived experiences could directly inform local planning .

I moved around the room speaking with carers. Some were open and vocal. Others were quieter, but their listening was just as powerful. Not everyone wants to speak publicly and that’s okay. Being present is also participation too.

Power of Attorney – protecting your voice

Later in the morning, Glen Miles spoke about the Mental Capacity Act and Lasting Power of Attorney .

As carers, we often assume we will automatically be consulted in crises. The reality is different. Without legal authority, our ability to advocate can be limited.

One key takeaway:

Don’t delay in arranging Lasting Powers of Attorney.
If you want your voice – or your loved one’s voice – to be heard, formalise it.

For carers who have experienced being excluded from decisions, this was a particularly important session.

Citizens Advice & practical support

Ian from Citizens Advice spoke before lunch about benefits, debt, housing and confidential support .

With the cost of living crisis, carers are under immense financial pressure. Many reduce employment hours or leave work entirely. The session was a reminder that:

Advice is free
It is confidential
You can attend anonymously
You are not judged

Lunch followed – catered by Fusion – and honestly, some of the most meaningful conversations happen over sandwiches. Carers swapping stories. Sharing phone numbers. Recommending services. That peer-to-peer support is priceless.

What stayed with me

What stayed with me most wasn’t just the agenda or the presentations.

It was:

The older carer quietly nodding as I spoke about emotional exhaustion.
The new carer asking, “Is it normal to feel this angry sometimes?”
The male carers who stayed behind to speak to me privately.
The carers from minority backgrounds who spoke about cultural barriers and stigma.

These forums matter because carers matter.

Unpaid carers save the system billions. But beyond economics, we hold families together. We absorb crises. We advocate in rooms where we’re not always welcomed.

Involve Kent (Carers’ Support – West Kent)

Address:
30 Turkey Court, Turkey Mill, Ashford Road, Maidstone, Kent, ME14 5PP

Telephone: 03000 810 005
General email: hello@involvekent.org.uk
Carers support contact: communitynavigation@involvekent.org.uk
Website: http://www.involvekent.org.uk

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.

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National Triangle of Care Community meeting – March 2025

By Triangle of Care community chair Matthew McKenzie FRSA BEM

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

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