Tag Archives: lived experience

Being heard, being involved: South London and Maudsley’s carers listening event

Matthew McKenzie FRSA BEM – Unpaid carer, author, poet and carer campaigner

On 11 November 2026, I attended South London and Maudsley’s carers listening event at ORTUS. The event brought carers and staff together to share experiences, hear about ongoing work and discuss what meaningful involvement should look like.

As an unpaid carer, author, poet and campaigner, I welcomed the opportunity to contribute through poetry, discussions and my carer information stall. There was warmth in the room, alongside a willingness to ask difficult questions about how services communicate with families and respond to their concerns.

Recognising the person behind the caring role

The opening conversations reminded us that carers bring knowledge, experience and skills that can make a real difference to someone’s care. They also highlighted that carers have their own physical and mental health needs.

One concern raised was that even carers who feel confident speaking up can struggle to get services to listen. This raises an important question: what happens to those who are less confident, unfamiliar with services or facing language barriers?

The welcome recognised the partnership between staff, service users and carers, alongside the support of Maudsley Charity in making the event possible.

We also took part in an introductory activity using the letters of our names to describe positive qualities. This offered a chance to meet one another as people and recognise the strengths we bring into the room.

At 11am, we observed the two-minute silence for Remembrance Day.

Giving carers a voice through poetry

My contribution included “Ode to Unpaid Mental Health Carers”, reflecting on the everyday experiences that can remain unseen: the phone beside the pillow, the plans rearranged and the knowledge of a loved one that existed long before their clinical notes.

Poetry can make space for experiences that are difficult to express in a formal meeting. It can acknowledge the love, frustration, uncertainty and hope that often exist together within caring.

I invited the audience to join in recognising carers and asked which lines stayed with them. Their responses returned to an important theme: carers are individuals with identities, feelings and needs of their own.

When caring becomes all-consuming, other parts of a person’s life can gradually disappear from view. We need opportunities to recognise those experiences and ask how the carer is managing.

I also shared a poem thanking NHS staff who listen, explain and treat carers as partners. Those relationships matter. Recognising the pressures on staff can sit alongside asking for better communication and support for families.

Information that carers can actually use

A major part of the event focused on the Families and Carers Information Project.

We heard about work to develop and improve ward guides, community team guides, borough information, webpages and shorter fact sheets covering topics carers have prioritised.

These resources respond to questions that many families will recognise:

  • Who is looking after my relative?
  • How do I contact the right person?
  • What does this service do?
  • What support is available to me?
  • Where can I raise a concern?

Presenters described extensive carer involvement in developing the resources. Some guides were being piloted, with further development and feedback still to come.

What stood out was the discussion about accessibility. Participants raised the needs of carers with hidden disabilities, neurodivergent carers, people facing language or literacy barriers, and those who cannot easily access information online.

These contributions showed why accessibility needs to be considered throughout the development process. Carers themselves need to help test whether the information works.

For me, the practical test is whether someone can find, understand and use the information when they are worried, exhausted or facing a crisis.

Learning from Heather Close

The Heather Close session offered examples of carers and service users helping to shape a service. This included involvement in the environment, information and staff recruitment.

We also heard about the developing carer support group. Topics emerging from the group included communication, medication information, understanding staff roles and managing difficult situations.

An encouraging example was the process of taking carers’ feedback into team discussions and bringing responses back to the group.

That continuing conversation matters. When carers give their time and share personal experiences, they need to know where their feedback goes, who considers it and what happens afterwards.

The session also highlighted the value of peer support. Carers may have very different circumstances, yet still recognise common experiences and offer one another understanding.

What does meaningful involvement look like?

The afternoon discussions gave participants space to explore what meaningful involvement means in practice.

Themes included feeling valued, equality with staff, regular contact, peer support, clear information and opportunities to influence change.

A useful distinction emerged between involvement in a loved one’s care and involvement in improving services.

Both matter. Families may need support to participate in care discussions, while also having knowledge that can help improve the wider service. Clear explanations are needed about the opportunities available, alongside sensitivity to what a carer is managing at the time.

Participants also raised diversity, racial equality and inclusion. Involvement needs to reach beyond those already familiar with meetings and NHS structures. We need to understand whose voices are missing and what would help them participate.

There was a clear emphasis on understanding impact. Carers want to see how their contributions influence decisions and whether improvements make a difference to people’s experiences.

Connecting the Triangle of Care and PCREF

There was also discussion about connecting the Triangle of Care with the Patient and Carer Race Equality Framework, known as PCREF, with further information and opportunities for involvement to follow.

This is an area close to my heart. Through my work with carers, I continue to hear how culture, language, racism and previous experiences of services can affect trust and involvement.

For me, bringing these approaches together offers an opportunity to ask more specific questions about who is being included, whose knowledge is being recognised and how services respond to different families.

The value will be seen in carers’ everyday experiences of contact, communication and support.

My reflections on the day

Alongside taking part in the sessions, I valued the opportunity to share my books and carer information, reconnect with others and hear both encouraging examples and honest concerns.

The event created space for carers to speak about what helps, what remains difficult and what they would like to see change.

My hope is that this learning becomes visible in everyday practice: clearer information, more consistent communication and feedback that leads to improvements carers can recognise.

Listening takes commitment beyond the event itself. It means returning to the people who contributed and showing them what has happened because they spoke.

Thank you to the organisers, Maudsley Charity, the staff who contributed and every carer who made time to share their experience.

National Cancer Caregiver Forum – October 2026 Update

by Matthew McKenzie FRSA BEM – Facilitator, National Cancer Caregiver Forum

Welcome to my October update from the National Cancer Caregiver Forum, which took place online on 28 October 2026.

For those unable to attend, this month’s session explored support for unpaid cancer carers, the role of hospice services, and why recognising a carer must lead to practical help. I welcomed colleagues from St Christopher’s Hospice, who explained their work with carers, families and communities.

I also shared an update on my engagement with Cancer Alliances and presented “Who Cares for the Cancer Carer?”, reflecting on the often unseen responsibilities of supporting someone living with cancer.

Building connections with Cancer Alliances

I opened the meeting by explaining why I am continuing to build relationships between the forum and Cancer Alliances.

Carers need opportunities to hear about support in their own areas, ask questions and influence services. A national forum can help make those connections, particularly when someone hears about good practice elsewhere and asks what is available locally.

On 27 October, I met with RM Partners, the West London Cancer Alliance, following questions about support for carers in West London.

We discussed identifying unpaid cancer carers, promoting the forum and creating opportunities for carers to contribute their experiences. RM Partners also described developing work around prehabilitation and rehabilitation, including physical activity, nutrition, information and psychological support.

An important question for me was how carers and families could contribute to this work. Their everyday knowledge can help services understand what happens between appointments and what makes support realistic to use.

I also updated the forum on my approach to North Central London Cancer Alliance, asking about support for cancer caregivers, opportunities for involvement and connections with our group. At the time of the October meeting, that conversation was still being developed.

The purpose of these links is to help carers find support and ensure their experiences influence how services develop.

St Christopher’s Hospice: support earlier in the journey

Our guests challenged a common assumption: that hospice care is only relevant during the final days of someone’s life.

They explained that St Christopher’s supports adults with life-limiting conditions, alongside their families and unpaid carers. Their presentation described support at home and within the hospice, working alongside other professionals involved in someone’s care.

A central message was that care involves more than managing physical symptoms. Emotional wellbeing, spiritual needs, relationships and personal wishes also matter.

For carers, understanding this earlier can make a difference. If people associate a hospice only with someone’s final days, they may not realise that there could be support worth exploring before that point.

The team described their work across Bromley, Croydon, Lambeth, Lewisham and Southwark, while explaining that access depends on the particular service and circumstances.

Community support and tackling inequalities

St Christopher’s community work includes addressing inequalities in access to palliative care and helping people understand what hospice support involves.

Our guests spoke about meeting communities, listening to concerns and responding to different understandings of illness, dying and bereavement.

This matters because information alone does not necessarily make a service accessible. People may have questions about whether a hospice understands their culture, beliefs or family circumstances. Others may simply not know whether the support is intended for them.

The team also described involving lived experience through consultation workshops, focus groups and an advisory panel. These provide opportunities to hear about barriers and use that learning to improve services.

This connected closely with the purpose of our forum: creating space for carers’ experiences to inform the support offered to them.

Support for unpaid carers

The presentation outlined several approaches to supporting carers, including peer groups, individual support and learning opportunities.

Carers Champion programme

The Carers Champion programme matches a carer with a volunteer who has lived experience of caring.

Our guests described a series of around six telephone conversations, offering space to talk, feel heard and reflect on the carer’s own wellbeing.

The examples shared illustrated the value of speaking with someone who understands caring from experience. A carer may find it difficult to express everything to family or friends, particularly when they are worried about upsetting others.

Having a separate space can help someone acknowledge feelings they have been carrying quietly.

Caring for Carers course

The team also described a free Caring for Carers course, delivered through three Zoom sessions.

Topics discussed included changing relationships, practical support and signposting, and loss or anticipatory grief.

Online delivery can make participation easier for some carers who struggle to leave home, although caring responsibilities can still make it difficult to find uninterrupted time.

At the meeting, the team said the next course was expected in February and offered to share further information for circulation.

Emotional support and anticipatory grief

We heard about support for anticipatory grief: the feelings someone may experience while preparing for the possible loss of a person they care about.

Carers may want to discuss those feelings, but they should also have the choice about when and whether to do so.

The presentation described bereavement buddy support and clinical services such as counselling, psychotherapy and art therapy, with access depending on the service and the person’s connection with St Christopher’s.

Can carers access support in their own right?

One question I raised was whether a cancer carer could receive support if the person they care for had not been referred to St Christopher’s.

Our guests explained that some community support, including carer groups and the Caring for Carers course, could be available more widely.

They also explained that the Carers Champion programme was not exclusively for carers of St Christopher’s patients, although capacity and waiting times needed to be considered. At the time of the meeting, they described a waiting list of approximately a month.

Clinical support for carers had different eligibility requirements and was linked to the person they supported being under St Christopher’s care.

This distinction is useful. Carers need clear information about which services they can approach directly, which require a referral and what they can expect next.

These details reflect the October presentation. Anyone interested should check current availability and eligibility with St Christopher’s.

Listening when carers say something has changed

I also asked how carers are involved in care planning and what happens when they tell staff that something has changed.

Carers often notice changes through their everyday involvement. They may recognise that someone is struggling, that a plan is becoming difficult to manage or that their own ability to continue caring has changed.

Our guests explained that detailed clinical arrangements sat with their clinical colleagues. They described assessments, advance care planning and opportunities for feedback through community work and consultation.

The discussion highlighted the importance of having a clear route for carers’ concerns. Inviting feedback is valuable, but carers also need to know who will respond and how their information will be used.

What happens when a carer feels unable to cope?

Another question concerned carers who feel exhausted or unable to manage at home, including outside normal working hours.

The team explained that St Christopher’s patients have an out-of-hours route for clinical concerns, including access to nursing advice.

For a carer’s own support needs, they described possible routes through their support programmes, social workers, GP and local services, depending on the situation.

We also discussed the distinction between the hospice’s own conversations and questionnaires with carers and a formal local authority carer’s assessment.

The presentation did not establish a general offer of respite. This remains an important question when carers need practical relief from their responsibilities as well as someone to talk to.

Matthew McKenzie: Who Cares for the Cancer Carer?

My presentation focused on the person supporting someone living with cancer.

People do not always describe themselves as carers. They may say they are a husband, wife, partner, daughter, son, sibling or friend. Their support may develop gradually, without a clear moment when they recognise how much they have taken on.

Yet around treatment and hospital appointments there can be another working day of responsibilities:

  • Arranging transport and accompanying someone to appointments.
  • Preparing meals and managing household tasks.
  • Making calls and following up information.
  • Remembering questions and keeping track of what happens next.
  • Balancing caring with employment, children or other family responsibilities.
  • Managing their own health alongside someone else’s needs.

These examples will not describe every carer. The point is to ask what someone is carrying that other people may not see.

Making room for the carer’s feelings

Caring can involve love and closeness alongside worry, frustration, uncertainty and exhaustion.

Those feelings can exist together. Carers should have space to describe their experience without being told how they ought to feel.

Some may feel guilty about asking for help. Others may worry that discussing their needs will add to the concerns of the person with cancer.

My message was that carers need room for their own experience too. They should not have to reach a crisis before someone asks how they are coping.

Within the forum, there is no expectation that someone must tell their full story. Listening, reflecting or contributing through the chat are all ways of taking part.

Recognition needs a practical next step

Recognising a carer is a starting point. What happens afterwards matters just as much.

A conversation about caring should help someone understand where to take their questions and what support they might explore.

Useful starting points can include:

  • “I support someone living with cancer. What support is available for me?”
  • “Who can I contact with my questions?”
  • “Could someone help me prepare for an appointment?”
  • “I am finding this difficult. What could help?”

For services, the corresponding questions are equally important: Who does this person rely on? What does their supporter need? What would make it easier for them to participate?

If someone says they are struggling, there needs to be clarity about who follows up.

Bridging the gap between knowing and accessing

A theme running through the meeting was the difference between knowing a service exists and feeling able to use it.

For one carer, a clear telephone contact may make the difference. Another may need written information to revisit later, language support or a session that fits around work and caring.

Someone else may first need reassurance that the service is relevant to their circumstances.

This is why asking “What would make this easier for you to access?” can be more useful than assuming that providing information has solved the problem.

Carers’ circumstances also change. Support that worked earlier in someone’s caring role may need to be reconsidered later.

Looking ahead

My thanks to the colleagues from St Christopher’s Hospice for sharing their work and answering questions about support for unpaid carers.

We discussed sharing presentation materials and course information, alongside the possibility of another visit to the forum in the new year.

I will also continue developing links with Cancer Alliances, helping connect carers with opportunities for support and involvement.

For anyone who could not attend, I hope this update offers useful questions to take into conversations with services. You are welcome to bring your experiences and questions to a future forum, or simply come along and listen.

What is one thing that would make your caring role more manageable?

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.


Language as Comfort – A PCREF Poem About Language, Belonging and Being Understood

By Matthew McKenzie – Carer activist

As I continue developing my poetry collection Unpaid, Unseen and Yet Unbroken: Poetry about Ethnic Mental Health Carers, I wanted to share another poem from the collection called Language as Comfort.

This is Poem 30 and explores something that can easily be overlooked when we talk about involvement in mental health services: the comfort and belonging that can come from being able to communicate in your own language.

Watch the poem below.

For many ethnic minority carers, language is about much more than translating individual words. Our mother tongue can be connected to family, culture, identity, memory and a feeling of safety.

When language becomes part of carer inclusion

Language barriers can affect how confidently carers participate in assessments, consultations and discussions about the person they support.

This is why one part of the poem asks services to record a carer’s language needs:

A carer should not have to start again at every appointment, repeatedly explaining how they need information to be communicated.

This connects strongly with the Patient and Carer Race Equality Framework (PCREF). If we want meaningful involvement from diverse communities, we need to think about whether our usual ways of communicating actually enable people to participate.

The poem ends with the idea of language helping someone to “break free from this cage”.

For me, that is the central message of Language as Comfort. Being understood can create confidence. Being able to communicate can create involvement. And recognising someone’s language can help create a sense of belonging.

Language should not be another barrier between carers and mental health services.

It can instead become part of the bridge.

Poem 30 from the developing collection Unpaid, Unseen and Yet Unbroken: Poetry about Ethnic Mental Health Carers.

Fear Has Roots – A PCREF Poem About Mistrust, Discrimination and Unpaid Caring

By Matthew McKenzie – Carer poet & Carer Activist

As I continue developing my poetry collection Unpaid, Unseen and Yet Unbroken: Poetry about Ethnic Mental Health Carers, I wanted to share another poem from the collection called Fear Has Roots.

The poem explores something I feel mental health services need to understand more deeply: mistrust does not always begin with the person standing in front of you.

Sometimes it has a history.

A carer may have experienced years of being dismissed, misunderstood or having their concerns minimised. They may have watched other carers from their community struggle to be heard. Experiences of discrimination can also travel through families and communities, influencing how safe people feel when approaching services.

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Making Time for Black Mental Health: Free Racial Trauma Seminar in Shoreditch

Think Tenacity Academy CIC is hosting another important Making Time for Black Mental Health event in London.

The free racial trauma seminar will take place on:

Wednesday 23 September 2026
3:00 pm–9:00 pm
Cottons Shoreditch, 321 Old Street, London EC1V 9LE

The event will provide a culturally informed space to explore racial trauma, mental health and wellbeing within Black communities. It will also create opportunities for people with lived experience, carers, professionals and community organisations to connect and learn from one another.

I attended a previous Making Time for Black Mental Health event and saw how valuable these community-led spaces can be. They enable conversations about race and mental health to take place in an environment where people feel understood, represented and supported.

As a lived experience Black mental health carer and advocate, I know that racial trauma can affect not only individuals but also families and unpaid carers. We need more culturally responsive spaces that recognise these experiences and make it easier to discuss mental health without fear, judgement or stigma.

The event is free to attend, but capacity is limited to approximately 45 places, so early booking is strongly recommended.

A related Racial Trauma Group Support event is also advertised for Thursday 1 October in Notting Hill.

Book your free place through Eventbrite

Find out more about Think Tenacity Academy CIC.

Help Shape Better Cancer Care for People with Learning Disabilities from Ethnic Minority Communities

By Matthew McKenzie – Chair of ethnic MH Carer forum / Chair of Cancer Carergiver group

I was recently sent information about an important cancer care project being led by Learning Disability England in partnership with the Race Equality Foundation which is funded by Macmillan Cancer Support.

The project aims to improve cancer care for people with learning disabilities from Black, Asian and minoritised ethnic communities. A working group is being established involving self-advocates, family members and friends who have experience of cancer.

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Becoming a Human Book at the DUALITY Event – The Carer They Didn’t See

By Matthew McKenzie – Carer Activist and Carer Advocate

On 8 September 2026, I had the honour of attending the DUALITY event at King’s College London, held at Bush House.

The event was a research and public/community engagement event connected to the INTERCEPTION study, based in King’s Department of Global Health & Social Medicine, within the School of Global Affairs / Faculty of Social Science & Public Policy.

There was a packed agenda, which I have shown below.

  • Registration, refreshments and photo exhibition — Attendees arrived, had refreshments and had an opportunity to look around the community photography exhibition.
  • Welcome and introduction to DUALITY — The organisers introduced the event and its focus on ageing, ethnicity, health and experiences of living with multiple long-term conditions.
  • Research Panel: Ethnicity, Ageing and Health — Researchers discussed work exploring inequalities and experiences at the intersection of ethnicity, ageing, health and multiple long-term conditions.
  • King’s Sport & Wellness energiser — Attendees were invited to take part in accessible seated stretches and movement exercises.
  • Human Library — Attendees could “borrow” Living Books for short conversations, hearing personal stories intended to build understanding, foster empathy and challenge assumptions. My Living Book was “The Carer They Didn’t See.”
  • Community information booths — Organisations and community representatives provided information and resources. This was also where I supported the Carers UK stall.
  • DUALITY Photography Exhibition — Photographs used visual storytelling to explore support, health, ageing and lived experience. My photograph “The Carer They Didn’t See” was included in the exhibition.
  • Photography Competition Awards — Winners of the DUALITY Photography Competition were announced, with “The Carer They Didn’t See” selected as one of the winning entries.
  • Creative performance — The programme included a creative lived-experience performance exploring identity, Caribbean heritage, racism, family, memory and culture.
  • Keeping Fit with Multiple Long-Term Conditions — This discussion brought professional and lived-experience perspectives together to explore chronic conditions, exercise, confidence and wellbeing.
  • Dinner and networking — The evening concluded with food and an opportunity for attendees, researchers, community groups and people with lived experience to connect.

This was quite a different event for me. I have attended many conferences, workshops and involvement events over the years as an unpaid carer, carer advocate and speaker. This time, however, I wasn’t simply attending or presenting.

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National Ethnic mental health Carer Forum : August Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

The August meeting of the National Ethnic Mental Health Carer Forum brought together unpaid carers, NHS leaders, healthcare professionals, academic researchers, and voluntary sector advocates from across the country. The session provided a vital space to address race equity, systemic racism, lived experience, and ongoing research into minoritised caring experiences.

Matthew McKenzie opened the meeting by welcoming attendees and reinforcing the core purpose of the national forum. He reflected on how the platform has grown into a crucial space where family carers can directly challenge health structures, influence decision-makers, and learn about national policy developments such as the Patient and Carer Race Equality Framework (PCREF). Matthew acknowledged that while discussions around institutional racism and health inequalities can be heavy and emotional, the forum remains a safe, respectful, and healing space dedicated to driving real, actionable change across the NHS.

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South West London Mental Health Carers Forum – August 2026 Update

By Matthew McKenzie, Co-Facilitator – South West London Mental Health Carers Forum

The South West London Mental Health Carers Forum met again during August 2026, bringing together unpaid carers to share experiences, discuss how the forum is developing and look at ways we can strengthen the voice of carers across South West London.

The forum continues to be a peer-led space shaped by carers themselves. An important message from the August meeting was that this is a group for carers, run with carers and influenced by carers. Members spoke about wanting people who join the forum to feel recognised, valued and able to support one another, rather than the group becoming overly formal or service-led.

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