Tag Archives: lived experience speaker

Reflections from the Royal College of Nursing PSI Alumni Conference 2025 – A Carer’s Perspective

Arriving and Opening Reflections

Walking into the RCN PSI Alumni Conference at Cowdray Hall on that crisp November morning, I felt a mix of pride, gratitude, and curiosity. It’s been many years since I first began speaking at RCN events like this, yet every time feels new because each gathering brings together nurses, carers, service users, and leaders who continue to shape the future of mental health care.

Before I continue to describe the event, let me sum up the Royal College of Nursing PSI programme. Basically the Psychosocial Interventions (PSI) programme is a nationally recognised training initiative designed to strengthen therapeutic skills of mental health professionals and embed recovery-focused, relationship-based care across services.

The PSI program is rooted in the principles of collaboration, reflection, co-production and empowerment, PSI equips practitioners with practical tools to support individuals experiencing mental distress, while also valuing the insight of carers and families.

I think what makes PSI stand out is its emphasis on seeing people beyond their diagnosis and fostering empathy, curiosity, and shared understanding between nurses, service users, and carers.

At the start of the conference and during it, I spoke to a few nurses over coffee, each reflecting on how PSI had shaped their practice one mental health nurse told me it had helped her “find her voice again.” For me, as a carer with lived experience, it was great to witness this sense of renewal. It reminded me why collaboration between professionals and lived experience communities is so essential.

Around 10 a.m., Catherine Gamble formally opened the event, setting a tone of gratitude and shared learning. Her introduction reminded us how much the alumni network had grown and how lived experience was now firmly part of the PSI culture.

As someone with lived experience of caring for my mum, who lived with schizophrenia, I approached the events not just as an observer but as someone deeply invested in the stories and struggles that bring us together as a triangle.

When I was invited to open the event and share my reflections as a carer, I knew I wanted to do more than talk about carers, I wanted to speak for them, and with them.


My Opening Talk – “The Nurses Who Walk With Us”

Standing at the podium, looking out at rows of passionate mental health nurses and lived experience, I began with gratitude. My words were simple but heartfelt:

“This is really about the nurses who walk with us, the ones who move beyond the labels, beyond the charts, and see the person, not the problem.”

I read a poem I had written to honour the compassion and resilience of those in the room a piece I called The Nurses Who Walk With Us.

The poem spoke about presence, about listening, and about the small acts of care that ripple into great change.

After my talk, I was moved by the warmth of the response. Many came up to share how my words mirrored their experiences or reminded them of why they came into nursing. That moment of connection that shared understanding set the tone for the day.


The Locksmiths Animation and Alumni Showcase

Following our opening session, Ellie Gordon and Stephen Jones launched the new animation “We Are the Locksmiths.” The film poetically portrayed mental health nurses as key-cutters shaping, adapting, and helping people find the right fit for recovery.

Watching it, I was struck by how accurately it captured the emotional labour of care, the balancing of vulnerability, patience, and professionalism

Next we had the Mentimeter session that morning, which was led by Professor Sally Hardy. She guided participants through reflective wellbeing questions using the interactive Mentimeter tool, encouraging everyone to think about how to sustain personal and professional wellbeing in mental health practice. Sally’s session wasn’t just about gathering feedback

Afterwards, the Alumni and Facilitators’ “Show and Tell Time” began. Groups from Sheffield NHS Trust, Sussex Mental Health Partnership, Lancashire Mental Health NHS trust, and Hereford NHS Trust sharing creative projects and reflections from their PSI practice. There were posters, poems, and community initiatives that had grown directly from the training. I wandered around the tables, speaking with participants who described how PSI had changed their teams. I think One mental health nurse told me, “We stopped seeing interventions as techniques and started seeing them as relationships.” It was inspiring


Workshop One – Working Together in Risk and Safety

After refreshments, we broke into workshops. I joined Workshop One: Lived Experience and Co-Production – Utilising Our Expertise, led by Hannah Cadogan and colleagues. It was energising to see lived experienced and mental health nurses working side by side.

I spoke about what co-production really means from a carer’s point of view. I shared my journey as someone who has cared for a family member living with schizophrenia and another with autism, and how those experiences taught me the importance of being included as an equal partner in care.

I explained that carers often hold a deep understanding of the person they support insights that can make a real difference if professionals take the time to listen and involve us from the start, not as an afterthought. Drawing on my work with Carers UK, the Carers Trust, and the Triangle of Care as many nurses from the mental health trusts were members of triangle of care programme., I spoke about how true co-production is built on trust, openness, and shared learning.

We discussed barriers time, fear, power differences but also solutions, like embedding co-production in supervision and reflective practice.

In this session, the discussion turned to how we can meaningfully involve carers and service users in planning safety not as tick-box exercises, but as genuine collaborations. I found myself reflecting on my own experiences of sitting in meetings where decisions were made about my mum rather than with us.

Hearing the nurses speak so openly about their challenges about time pressures, fear of getting it wrong, and the emotional toll of risk reminded me that we’re all human in this process. True co-production means sharing not only responsibility but also vulnerability.

One participant spoke about the importance of patience: “We’re not here to fix; we’re here to find a way in.” That line stayed with me. It echoed my own philosophy that care starts with listening, not solving.

By the end of the workshop, we agreed that co-produced safety isn’t about removing risk; it’s about building trust so we can face risk together.


Workshop Two – Co-Production and Carer Involvement

Lunch provided another opportunity for networking. The Mental Health Forum stand and MHP stall displayed resources on psychosocial practice.

I met others who had recently completed the course.

Conversations were open, curious, and full of mutual respect the kind of professional empathy that sustains hope in challenging work.

After lunch we heard from Professor Nicola Ranger, RCN General Secretary, who welcomed everyone back, commending the alumni for sustaining PSI’s legacy. Her words “you are the custodians of compassion” perfectly captured the spirit of the day.


The evaluation session of the RCN PSI Alumni Conference was presented in partnership with London South Bank University (LSBU), who have been key academic collaborators in examining the outcomes and long-term impact of the Psychosocial Interventions (PSI) programme. This section was introduced by Stephen Jones, and Professor Chris Flood, a leading figure in mental health nursing and research at LSBU.

Together, they outlined how LSBU’s evaluation seeks to capture not just the quantitative outcomes of PSI such as improved confidence and competence among practitioners but also the qualitative stories of change, growth, and compassion that the alumni community embodies.

There will be several teams at LSBU, but I was impressed on the make up of the Advisory and Supervisory Team provides academic oversight and strategic direction.

  • Professor Patrick Callaghan, Professor of Mental Health Science at LSBU, offers extensive expertise in psychosocial interventions and nursing research leadership.
  • Professor Chris Flood, a leading mental health and adult nurse researcher, specialises in health economics, survey design, and qualitative inquiry.
  • Professor Neil Brimblecombe, Professor of Mental Health and Learning Disability, contributes his expertise in workforce development, nurse prescribing, and policy analysis linking the PSI evaluation to broader NHS workforce strategies.
  • Professor Eddie Chaplin, an expert in intellectual disabilities and psychosocial interventions, supports the development of inclusive frameworks for peer support, guided self-help, and service co-production.

Afternoon workshop

In the afternoon, I attended Workshop Three: Working Together in Risk – Co-Production, Suicide and Personalised Safety. It was deeply emotional. We discussed how carers can be crucial in early warning and safety planning, but only if professionals create safe spaces for them to speak. The workshop was presented by Berkshire Healthcare NHS Foundation Trus

During the workshop, we took part in reflective exercises that encouraged us to consider what “shared safety” truly means. We were asked to think of times when communication broke down between families, patients and professionals, and how different outcomes might have been possible if trust and collaboration had been stronger.

Celebrating Archievements

Those who finished the RCN PSI programm were presented with a RCN PSI alumni badge, which i felt was a small but powerful symbol of commitment, compassion, and continued learning. For many, receiving that badge wasn’t just about completing a programme; it represented belonging to a network that values empathy, partnership, and the courage to keep improving mental health care together.

Reflections and Looking Ahead

As the day drew to a close, we took a quiet moment to reflect. Conferences like this are not just about learning they are about belonging. They remind me that, while the caring role can often feel isolating, there is a wider network of understanding and solidarity.

I missed out a lot more that took place at the alumni event, but watch out for more exciting news from the RCN in future.

To find out more about the RCN PSI Progamme, click link below.

https://www.rcn.org.uk/Professional-Development/Educational-programmes-and-services/Psychosocial-Intervention-Programme

National Schizophrenia Awareness Day: Support & Stigma

Understanding Schizophrenia: Breaking the Silence and Challenging Stigma

Schizophrenia remains one of the most misunderstood mental health conditions, often shrouded in myths, misconceptions, and stigma. As National Schizophrenia Awareness Day took place on July 25th, it is an opportune moment to reflect on the realities of living with schizophrenia, the challenges faced by those affected, and the crucial role of unpaid carers.

This article taken as a transcript from my video delves into the importance of awareness, the lived experiences of individuals and their families, and the collective responsibility to foster understanding and support.

The Significance of National Schizophrenia Awareness Day

National Schizophrenia Awareness Day, observed annually on July 25th in the UK, is more than just a date on the calendar. It is a day dedicated to raising awareness, challenging stigma, and building understanding around schizophrenia which is a condition that affects approximately one in every 100 people in the UK. The day is spearheaded by organizations such as Rethink Mental Illness, Change Mental Health in Scotland, Adared Recovery in Wales, and Mindwise in Northern Ireland. Together, these organizations form Mental Health UK, a collaborative effort to provide vital support and advocacy for those living with schizophrenia and their carers.

What is Schizophrenia?

Schizophrenia is a complex mental health condition characterized by a range of symptoms, including hallucinations, delusions, and disorganized thinking. However, it is essential to recognize that schizophrenia is not a one-size-fits-all diagnosis. The experience of schizophrenia exists on a spectrum, with each individual’s journey being unique. For some, symptoms may be more pronounced, while others may experience periods of stability and recovery.

Common Symptoms

  • Hallucinations: Sensing things that are not present, such as hearing voices.
  • Delusions: Strongly held false beliefs that are not based in reality.
  • Disorganized Thinking: Difficulty organizing thoughts, leading to incoherent speech or trouble concentrating.

Despite these clinical descriptions, it is crucial to remember that schizophrenia is, above all, a human experience. The condition affects not only the individual but also their families, friends, and communities.

The Human Experience: Beyond the Diagnosis

Too often, the narrative around schizophrenia is dominated by fear, misunderstanding, and negative stereotypes. Individuals living with schizophrenia frequently face stigma, isolation, and discrimination not only just from society at large, but sometimes even within the mental health system and healthcare services themselves. This stigma can be even more pronounced for those from minority groups, compounding the challenges they already face.

The Impact of Stigma

Stigma surrounding schizophrenia can have far-reaching consequences. It can:

  • Discourage individuals from seeking help or treatment.
  • Lead to social isolation and exclusion.
  • Affect employment and educational opportunities.
  • Create barriers to accessing quality healthcare.

Challenging these misconceptions requires a collective effort to educate the public, promote empathy, and highlight the real stories of those living with schizophrenia.

The Unseen Heroes: Unpaid Carers

While much attention is rightly given to those living with schizophrenia, there is another group whose contributions often go unrecognized—unpaid carers. These are the family members, close friends, partners, and loved ones who provide daily support to individuals with schizophrenia. Their role is both vital and demanding, yet their voices are frequently underrepresented in policy discussions, service planning, and awareness campaigns.

Who Are Unpaid Carers?

Unpaid carers are individuals who, without formal training or compensation, dedicate their time and energy to supporting someone with schizophrenia. This support can take many forms, including:

  • Emotional Support: Listening, comforting, and advocating for their loved one.
  • Crisis Management: Staying up late, managing emergencies, and ensuring safety.
  • Practical Assistance: Helping with daily tasks, medication management, and appointments.
  • Financial Support: Bearing the costs associated with care, often at personal expense.

The burdens carried by unpaid carers are not just emotional but can also be financial and physical. Despite their critical role, they often receive limited support and recognition.

The Lived Experience of Carers

Many carers, like the speaker’s own mother, navigate the complexities of supporting a loved one with schizophrenia with little guidance or acknowledgment. They become advocates, crisis managers, and emotional anchors, often at the expense of their own well-being. The lack of formal training and support can leave carers feeling isolated and overwhelmed.

Building a Better Future: What Needs to Change

Raising awareness about schizophrenia is not just about increasing knowledge—it is about fostering a culture of care, action, and inclusion. To truly support those affected by schizophrenia and their carers, several key areas need attention.

1. Improving Services and Support

Mental health services must be designed to listen to and address the needs of both individuals with schizophrenia and their carers. This includes:

  • Accessible Support: Ensuring timely access to mental health services and crisis intervention.
  • Carer Involvement: Actively involving carers in care planning and decision-making.
  • Tailored Resources: Providing information, training, and respite for carers.

2. Promoting Inclusive Research

Research into schizophrenia should not only focus on clinical outcomes but also incorporate the experiences of unpaid carers. Their insights are invaluable in understanding the full impact of the condition and in developing effective interventions.

  • Participatory Research: Engaging carers as partners in research projects.
  • Holistic Approaches: Studying the social, emotional, and economic effects of schizophrenia on families.

3. Educating the Public

Public education is essential to dispel myths and challenge outdated beliefs about schizophrenia. Awareness campaigns should:

  • Highlight Lived Experiences: Share real stories from individuals and carers.
  • Combat Stereotypes: Address common misconceptions and promote accurate information.
  • Encourage Empathy: Foster understanding and reduce fear and prejudice.

4. Policy and Advocacy

Policymakers must recognize the contributions of unpaid carers and ensure their needs are reflected in mental health policies. This includes:

  • Carer Rights: Protecting the rights of carers in the workplace and healthcare settings.
  • Financial Support: Providing financial assistance and benefits to carers.
  • Representation: Including carers in policy development and service evaluation.

The Power of Awareness: Moving Beyond Knowledge

Awareness is not a passive state, it is an active commitment to care, act, and include others. National Schizophrenia Awareness Day serves as a reminder that understanding schizophrenia goes beyond statistics and symptoms. It is about recognizing the humanity of those affected, valuing the contributions of carers, and working together to create a more inclusive and supportive society.

Taking Action: How You Can Help

Everyone has a role to play in challenging stigma and supporting those affected by schizophrenia. Here are some ways you can make a difference:

  • Educate Yourself: Learn about schizophrenia from reputable sources and listen to the experiences of those affected.
  • Challenge Stigma: Speak out against stereotypes and discrimination when you encounter them.
  • Support Carers: Offer practical help, emotional support, or simply a listening ear to carers in your community.
  • Advocate for Change: Support policies and organizations that promote mental health awareness and carer rights.
  • Share Awareness: Use your voice and platforms to spread awareness, especially on days like National Schizophrenia Awareness Day.

Personal Reflections: The Importance of Inclusion

As highlighted in the video, awareness is not just about knowing—it is about caring, acting, and including others. The journey of living with schizophrenia, or supporting someone who does, is often marked by resilience, compassion, and hope. By listening to and amplifying the voices of those with lived experience, we can build a more understanding and supportive world.

The Role of Community

Community support is vital for both individuals with schizophrenia and their carers. Whether through peer support groups, advocacy organizations, or informal networks, connection and solidarity can make a significant difference. Communities that prioritize mental health and inclusion are better equipped to challenge stigma and provide meaningful support.

The Value of Recognition

Recognition of the efforts and sacrifices made by unpaid carers is long overdue. Their dedication sustains individuals and families, often in the face of immense challenges. By acknowledging and supporting carers, we not only improve their well-being but also enhance the quality of care for those living with schizophrenia.

Looking Ahead: Hope and Progress

While the challenges associated with schizophrenia are significant, there is reason for hope. Advances in research, growing public awareness, and the tireless efforts of advocacy organizations are paving the way for a more inclusive and supportive future. By working together—individuals, families, communities, and policymakers—we can break the silence, challenge stigma, and ensure that no one faces schizophrenia alone.

A Call to Action

As National Schizophrenia Awareness Day approaches, let us commit to more than just awareness. Let us strive for understanding, compassion, and action. Whether you are living with schizophrenia, supporting a loved one, or simply seeking to learn more, your voice and efforts matter. Together, we can build a society that values every individual and supports every carer.

Conclusion

Schizophrenia is a complex and deeply human experience, affecting not only those diagnosed but also their families, friends, and communities. National Schizophrenia Awareness Day is a powerful reminder of the importance of awareness, inclusion, and action. By challenging stigma, supporting unpaid carers, and advocating for better services and understanding, we can create a world where everyone affected by schizophrenia is valued, supported, and empowered.

Let us use this day and every day to listen, learn, and act. Share stories, challenge myths, and offer support. In doing so, we honor the resilience of those living with schizophrenia and the dedication of their carers, building a more compassionate and inclusive future for all.

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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