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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: October Update 2026

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

Welcome to my October update from the National Ethnic Mental Health Carers Forum. I am Matthew McKenzie, and I chair this forum to give unpaid mental health carers from ethnic minority communities a space to share experiences, question services and connect with people working to improve care.

Our meeting on Friday 30 October brought together presentations and discussion about racial inequalities, the wellbeing of unpaid carers, and the difficulties families face when trying to secure appropriate mental health support.

We heard from Tracy Bignall from the Race Equality Foundation and carer campaigner Agi, who presented findings from a substantial piece of work with carers in East Sussex. Their presentations approached change from different directions: challenging structural racism across institutions, and gathering carers’ experiences to press for improvements within local services.

Throughout the meeting, a shared concern emerged. Carers are often expected to hold care together, yet their knowledge, health and support needs can receive too little attention.

Tracy Bignall – Race Equality, Unpaid Caring and Mental Wellbeing

Tracy Bignall, Director of Policy Engagement at the Race Equality Foundation, introduced the organisation’s work to improve experiences and outcomes for Black, Asian and minority ethnic communities.

She explained that the Foundation works through research, evidence, practical interventions and partnerships to challenge discrimination and disadvantage. Its work extends across health inequalities, family support and other areas affecting people’s lives.

For this forum, Tracy focused on the relationship between unpaid caring, ethnicity and mental wellbeing. She highlighted the pressures caring can place on employment, household finances, physical health and emotional wellbeing. These pressures can become particularly demanding for people balancing caring with paid work, raising children or supporting ageing parents.

Recognising yourself as a carer

An important part of Tracy’s presentation concerned who identifies with the word “carer”.

For some families, supporting a relative is understood primarily as a family responsibility. People may describe themselves as a parent, partner, sibling or adult child without recognising that they are also providing unpaid care.

Language and cultural expectations can influence this recognition. The term “carer” may not translate easily into someone’s understanding of their role, and seeking help may feel unfamiliar or uncomfortable.

This matters because people who do not identify as carers may miss information, assessments, peer support or other assistance. Services need to explain what caring means in ways that connect with people’s everyday lives.

Racism, financial pressure and trust in services

Tracy explained that carers’ wellbeing must be understood within the wider circumstances of their lives.

Financial pressure can reduce opportunities to meet friends, enjoy hobbies or take part in activities that support mental wellbeing. For someone already carrying substantial caring responsibilities, losing those opportunities can deepen isolation.

She also discussed the cumulative impact of racism and discrimination across education, employment, healthcare and later life. These experiences can affect mental wellbeing and influence whether people feel safe approaching services.

Where communities have experienced discriminatory treatment, encouraging people to seek support requires more than providing information. Services must address the experiences that have damaged trust.

Moving towards structural change

Tracy described the Foundation’s work through the London Anti-Racism Collaboration for Health programme, which I had previously contributed to.

The programme brought together partners from the NHS, public health, local government, social care, voluntary organisations and communities. Its purpose was to help institutions take an active anti-racist approach to health inequalities, including examining policies, commissioning and workforce practices.

She also discussed work developing recommendations on structural racism and the wider determinants of health. Housing, the environment and other conditions shape people’s wellbeing, so improving health requires action beyond healthcare appointments.

Tracy then introduced a five-year programme developing anti-racist collaboratives in selected areas. A central feature is the involvement of people with lived experience in identifying priorities and shaping decisions.

The programme creates opportunities for communities and organisations to use evidence, test approaches and share learning. Support for unpaid carers could become a focus where communities identify it as a local priority.

Discussion Following Tracy’s Presentation – Accessibility, Culture and Meaningful Co-production

The discussion brought Tracy’s presentation into contact with the practical concerns carers encounter.

Older carers and isolation

Members raised the needs of older carers who are managing their own health conditions or mobility difficulties while supporting someone else.

There was particular concern about isolation during winter and about support that assumes everyone can travel or participate online.

Tracy clarified that the Foundation primarily works through research, policy, partnerships and support for organisations, rather than providing a general frontline carers service. She described previous work supporting organisations assisting older people and families affected by dementia, including efforts to help smaller community organisations access funding.

The exchange highlighted the importance of sustaining trusted local organisations that already have relationships with carers.

Accessible information requires more than translation

Members questioned whether written translations are enough to make information accessible.

Speaking a language does not necessarily mean someone can comfortably read it. Equally, speaking conversational English does not mean someone can understand a complex letter about care.

The discussion identified a need for different formats, including:

  • Plain language and Easy Read information.
  • Pictures and visual explanations.
  • Spoken information and short videos.
  • British Sign Language and appropriate interpreting support.
  • Clear explanations of available services and how to access them.

Tracy described the Foundation’s use of different formats and work developing information about access to interpreting support within the NHS.

A recurring concern was that people cannot use support they have never been told exists. Accessibility therefore includes how services explain and promote what is available.

Cultural needs and disabled parent carers

Members described situations in which carers felt their cultural needs were poorly understood or dismissed.

Concerns included preferences around intimate personal care, assumptions about family responsibilities, and the experiences of disabled people who also care for someone else.

The discussion challenged the idea that receiving support for your own disability prevents you from being a carer. People can occupy both roles, and services need to understand the whole family situation.

Tracy acknowledged the difficulties and emphasised the importance of personalised care, informed challenge and working through trusted community organisations.

Co-production must influence decisions

Another important question concerned how to make co-production work in practice.

Tracy described an anti-racist co-production resource being developed with partners. She also highlighted a familiar tension: communities may explain clearly how information should be presented, only for institutions to favour their established wording and processes.

The discussion reinforced that asking people to contribute is only part of co-production. Organisations must be willing to give those contributions weight and change their approach.

For carers, this means being able to see how their involvement has affected decisions, communication or care.

Agi – Turning East Sussex Carers’ Experiences into Evidence for Change

Agi presented findings from a report developed through the experiences of unpaid carers supporting adults with serious mental illness in East Sussex.

She spoke about her own long experience of caring and how attending a carers group helped her recognise that role. Through those meetings, she repeatedly heard similar concerns about communication, crisis support, exclusion and difficulties navigating services.

The report grew from a desire to bring those experiences together and present them to the local mental health trust as evidence requiring a response.

The work used a questionnaire containing 15 rated questions and two open-ended questions exploring carers’ concerns and suggestions. Agi described contributions from 71 carers supporting around 80 people.

These were findings from a particular group of respondents. However, many of the issues strongly resonated with those attending our national forum.

Long-term caring and complex responsibilities

Agi described a respondent group containing many women, older carers and people who had been caring for more than 15 years. Many supported adult children.

The report also highlighted complex needs, multiple diagnoses and the additional demands placed on people caring for more than one person.

These findings raised questions about how services assess the scale of someone’s caring responsibilities. Supporting one relative can already involve substantial work; caring for several people can leave very little space for the carer’s own health and wellbeing.

Responsibility without sufficient involvement

A central finding was that carers often felt they carried excessive responsibility while receiving limited professional support.

Respondents described having to advocate repeatedly to secure care, while not always feeling listened to or respected.

This is a serious tension within mental health care. Families may be relied upon to notice deterioration, manage difficulties at home and support recovery, yet struggle to be included when decisions are made.

Agi’s recommendations called for stronger partnership with carers, including practical implementation of the Triangle of Care.

Communication and information sharing

Communication emerged as a major area of concern.

Agi reported that 86% of respondents said they were informed about decisions, meetings or services only sometimes or not at all.

Carers wanted clearer, more consistent communication between teams and with families. They also wanted timely responses, accessible information and less jargon.

Poor communication places additional work on carers. They may have to chase updates, repeat information and work out which service is responsible, while also supporting someone who is unwell.

Consent and confidentiality

The report highlighted the stress created when consent and confidentiality are applied rigidly, particularly during crises or inpatient care.

Agi called for better staff training and clearer communication about what can be shared and how carers can contribute.

An important point in her presentation was that restrictions on disclosing information should not prevent staff from listening to information carers need to provide.

Families may hold essential knowledge about changes in behaviour, previous treatment, medication difficulties or emerging risks. A meaningful partnership needs a reliable route for that information to reach the care team.

Continuity and the importance of care coordination

Agi reported that 90% of respondents felt the person they supported had received insufficient care, while 69% said the person had no care coordinator.

She described continuity as one of the report’s strongest themes. Carers whose relatives had a care coordinator reported better experiences, and the report called for stronger coordination across services.

The value of a coordinator was explained in practical terms: someone who knows the person, understands the family context, follows up concerns and helps connect different parts of the system.

For people who find it difficult to engage with unfamiliar professionals, a trusted and consistent relationship can be particularly important.

Crisis support when families need it most

Agi described concerns about reaching crisis services, lengthy waits and the suitability of busy emergency departments for people experiencing severe mental distress.

Carers wanted responsive support outside normal working hours, clearer routes to help and more home-based interventions where appropriate.

The report also raised concerns about suicide prevention, aftercare and whether plans developed within services were reaching families in a useful form.

The question running through this section was straightforward: when a family reaches crisis point, can they obtain timely help that responds to the situation they are facing?

A broader approach to care and recovery

The report called for more individualised, therapeutic and holistic care.

Carers wanted greater attention to family work, psychological support, housing, financial advice, meaningful activities and complex or neurodiverse needs.

Agi also explained that the existence of a community activity or service does not guarantee that someone can use it. A person may need sustained support and a trusting relationship before they feel able to participate.

Recommendations therefore need to address the steps between offering a service and enabling someone to benefit from it.

Taking the findings to decision-makers

Agi described presenting the report to senior leaders and developing further conversations with the trust, including its Patient Advice and Liaison Service.

She acknowledged that learning how to work with institutional structures and constraints takes time. Her aim remained to secure practical improvements that carers and the people they support could experience.

The report offered a way to move repeated concerns from individual conversations into a collective account that services could examine and respond to.

Discussion Following Agi’s Presentation – Racial Trauma, Diagnosis and Advocacy

Members recognised many of the report’s findings and explored where further attention was needed.

Racial trauma must be explicitly recognised

The discussion raised the importance of trauma-informed care that recognises racism and racial trauma.

Members described how racial inequality, Islamophobia, disability-related barriers and gender could interact with the difficulties already identified in the report.

Agi acknowledged that the largely White respondent group meant racial inequalities had not emerged as a major distinct theme. She explained that trauma-informed support featured in the report, while recognising the need to give racial experiences greater attention.

For our forum, this was an important distinction. A general account of poor care may capture some shared experiences while still missing the specific barriers faced by ethnic minority families.

Late diagnosis and lack of diagnosis

Members also raised concerns about late diagnosis and situations where people remain without a diagnosis despite substantial difficulties.

Families can spend long periods providing support while struggling to secure assessment, recognition or an appropriate response.

The discussion highlighted the uncertainty and exhaustion this creates. Caring responsibilities continue even when a clear pathway into services has not been established.

Agi recognised this as an issue requiring further attention, although it had not been fully captured by the questionnaire.

The role of advocacy

An advocacy contribution to the discussion explored how independent support can help people understand options, raise concerns and challenge decisions.

Members considered advocacy in relation to hospital care, community services, assessments and complaints. There was also interest in further information or training so carers could better understand different forms of advocacy.

The discussion showed that awareness alone is insufficient. People need to know which service is relevant, how to contact it and what support it can provide in their circumstances.

There was particular concern that carers’ perspectives should remain visible in conversations about advocacy and mental health reform.

Planning ahead and recording preferences

Advance choice statements and planning during periods when someone feels able to participate were also discussed.

Examples included recording preferences about family involvement, treatment concerns and cultural needs. Hair care, food and personal care were raised as practical aspects of dignity that can easily be overlooked.

However, members also explained why planning ahead can be difficult. Someone experiencing persistent or recurring distress may have limited opportunities to engage with paperwork or unfamiliar professionals.

This brought the conversation back to continuity. Families may need help from a trusted professional to make planning possible and revisit it over time.

Trust connects people to support

One of the strongest points in the discussion was that numerous available services can still feel inaccessible.

A person experiencing psychosis or severe distress may find it difficult to trust new professionals or engage with another referral. Carers may then be expected to bridge every gap.

Members described the need for consistent relationships that help connect the person, family and different services.

Advocacy, care coordination and community support can each contribute. Their usefulness depends partly on whether the person can access them and whether someone helps make those connections.

Matthew McKenzie – Reflections on Partnership, Consent and Carers’ Relationships

As chair, I was struck by how closely the two presentations connected.

Tracy’s presentation asked us to consider the structures that produce and sustain racial inequalities. Agi’s presentation showed how carers can gather evidence of everyday service difficulties and use it to seek change.

Both made clear that listening needs to lead somewhere.

During the closing discussion, I reflected on the pressure that consent difficulties can place on the relationship between a carer and the person they support.

A carer may be trying to obtain urgent help while also preserving a relationship built over many years. Repeatedly having to intervene can create strain, particularly if the person experiences the carer as part of an unwanted service response.

Services need to recognise that relationship as an essential part of the situation. Carers should receive clear information about available support, opportunities for planning and how concerns can be communicated. These conversations also need revisiting as circumstances change.

There was considerable interest in returning to consent, confidentiality, advocacy and advance planning at a future forum.

The depth of discussion meant that we ran beyond our planned time and could not hear all the scheduled contributions. I am grateful to our speakers and everyone who contributed their experience, questions and ideas.

Continuing the Work

October’s forum reinforced the need for racial equality work and carer involvement to remain closely connected.

Carers need accessible information, culturally responsive support, reliable communication and recognition of their own wellbeing. People receiving care need relationships and services that recognise their individual circumstances, preferences and aspirations.

The meeting also demonstrated the value of bringing national policy work and local carer evidence into the same space. Each can strengthen the other, helping us ask more precise questions about what needs to change and how progress will be recognised.

Thank you to Tracy Bignall and Agi for sharing their work, and to everyone who helped make this such a thoughtful discussion.

I will continue using the National Ethnic Mental Health Carers Forum to bring these experiences together, encourage challenge and keep attention on the changes that matter to carers and their families.

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 London Mental Health Carers Forum – August 2026 Update

By Matthew McKenzie – Carer forum facilitator

On Monday 24 August, I facilitated another meeting of the South London Mental Health Carers Forum. The forum brings together unpaid carers and carer representatives from Lewisham, Lambeth, Southwark and Croydon, giving people a space to share experiences, learn about their rights and influence the development of local mental health services.

We welcomed carers with many different experiences, including parents supporting adult children with serious mental illness, autism and substance misuse, as well as people involved in advocacy, peer support, staff training and service development. Some members had been navigating the mental health system for many years, while others were newer to caring and looking for guidance.

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Why Black Carers Struggle to Access Mental Health Support

By Matthew McKenzie

Black unpaid carers can face significant barriers when trying to access mental health support for themselves or the person they care for.

These difficulties may include long waiting times, financial pressure, cultural stigma, fear of statutory services and a shortage of professionals who understand the effects of racism, racial trauma and culturally specific caring experiences.

In my new video, I examine how misdiagnosis, over-policing and expectations that Black families should simply remain “strong” can create mistrust and discourage carers from asking for help.

Drawing on my perspective as a Black lived-experience carer, I also consider what mental health services can do differently. Genuine improvement requires culturally responsive support, greater representation, safe spaces for carers, accessible community-led services and meaningful partnership with Black carers and families.

PCREF provides an important opportunity to challenge racial inequalities, but its success will depend on whether services listen to lived experience and turn commitments into visible action.

2nd Voices & Verses – PCREF Poetry Event

By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador

Cygnet PCREF Carer Lead & Carer Ambassador

On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.

The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services.

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National Ethnic mental health Carer Forum : July Update 2026

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

The July meeting welcomed unpaid carers, NHS organisations, universities, researchers and community groups from across England to discuss how mental health services can become more inclusive for carers from ethnic communities.

Matthew McKenzie opened the meeting by reflecting on over thirteen years of facilitating the forum and explained how its purpose has grown alongside national initiatives such as the Patient and Carer Race Equality Framework (PCREF) and the Triangle of Care. The forum continues to provide a national platform where carers can influence NHS services, hear about new research and share experiences with professionals and decision-makers.

Matthew introduced the day’s programme, which included research presentations, NHS England engagement, updates from mental health trusts and national organisations, and opportunities for carers to influence future policy

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Triangle of Care Community Meeting: July 2026 update

By Matthew McKenzie – Triangle of Care – Community group chair

Putting Carers at the Centre of Care

The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.

One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services.

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South London Mental Health carer forum update June 2026

By Matthew McKenzie – Chair of the group

If you weren’t able to join our June South London Mental Health Carers Group meeting, here’s a summary of the main discussions and updates. As always, the meeting brought together unpaid carers from across Lambeth, Lewisham, Southwark and Croydon to share experiences, raise concerns and keep each other informed about developments affecting mental health carers.

Why these meetings matter

One of the strongest themes throughout the meeting was the importance of carers staying connected. Many carers cannot attend every committee or involvement meeting due to their caring responsibilities, work or other commitments. By sharing updates, we can help ensure everyone remains informed about changes that may affect them and the people they support.

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National Ethnic mental health Carer Forum : May Update 2026

Blog by Ethnic Mental Health Carer forum Chair – Matthew McKenzie

The May 2026 Ethnic Mental Health Carers Forum brought together carers, researchers, clinicians, community leaders, and representatives from mental health organisations across England. Although attendance was smaller than usual, the discussion was rich, honest, and highly informative, covering Mental Health Act reform, carers’ experiences, service inequalities, innovative approaches to care, and new research opportunities.

For those who were unable to attend, this blog provides a comprehensive overview of the meeting, including key presentations, audience questions, responses from speakers, and useful resources shared during the session.

Opening Remarks

As the chair, I welcomed attendees and outlined the agenda. The meeting focused on following:

  • Mental Health Act research and reform
  • Carers’ experiences supporting loved ones through detention
  • Findings from a major East Sussex carers research project
  • Resources for carers under the Mental Health Act
  • Electronic Health Records and future developments
  • Wider discussions on racial trauma, inequalities, and service improvement

The meeting also provided opportunities for networking, sharing lived experiences, and highlighting innovative projects happening across the country.

Research Study: Supporting a Loved One Through Mental Health Detention

Dr Maeve Conneely from University College London opened the meeting with a presentation on a new research study exploring the experiences of people who have been assessed or detained under the Mental Health Act, as well as the experiences of family members and carers who supported them through that process. The study has been commissioned as part of the wider programme of Mental Health Act reform and aims to understand how the current “Nearest Relative” provisions operate in practice before changes are introduced under the new legislation.

Dr Conneely explained that researchers are particularly interested in hearing from carers who were involved in supporting a loved one but who were not formally recognised as the “Nearest Relative” under the existing legal framework. She highlighted that these experiences are especially important because they can reveal where carers have been excluded from decision-making, denied access to information, or prevented from contributing to assessments despite playing a significant role in supporting the individual concerned. The study is open to anyone aged 16 or over who has direct experience of Mental Health Act assessments, detentions, Community Treatment Orders, holding powers, or related interventions, whether as a patient or as a supporter.

The research is linked to ongoing reforms of the Mental Health Act and seeks to understand how the “Nearest Relative” provisions currently operate before changes are implemented.

Who Can Take Part?

The study is looking for:

  • People who have been detained under the Mental Health Act
  • Family members and carers who supported someone during detention or assessment
  • Individuals who should have been involved as a nearest relative but were not
  • Anyone aged 16 or over with relevant experience

Interviews are conducted online and participants receive a £30 shopping voucher as a thank-you for their time.

Key Question from Participants

Q: Does the study include situations where someone should have been involved but wasn’t?

Response: Yes. Researchers are particularly interested in understanding experiences where carers or family members were excluded from decision-making processes despite playing a significant caring role.

Another Important Question

Q: Do carers need permission from the person who was detained before participating?

Response: No. Carers are sharing their own experiences and therefore only need to provide their own consent.

Discussion Themes

Participants highlighted:

  • Long-standing inequalities affecting Black communities under the Mental Health Act.
  • The overuse of psychiatric labels without sufficient exploration of trauma.
  • The need to understand why some individuals receive significantly different experiences of care, including access to private mental health facilities.
  • Concerns about trust in mental health services and the lasting impact of poor experiences across generations.

Several carers committed to taking part in the study to ensure lived experience informs future policy.

East Sussex Carers Research Project: What Carers Told Us

Age Angiolini presented findings from a year-long carers-led research project examining the experiences of family carers supporting people with serious mental illness across East Sussex. The study was developed in response to repeated concerns raised by carers at local support meetings and sought to capture their experiences of interacting with mental health services provided by the Sussex Partnership Foundation Trust (SPFT).

Although the research received 71 responses, representing only a proportion of the carers population in the region, the findings revealed a striking consistency in the challenges carers face. The survey explored themes including carers’ involvement in care planning, communication with services, consent and confidentiality, quality of care, crisis support, and priorities for improvement. Among the most significant findings were that 72% of carers reported being only sometimes involved or not involved at all in their loved one’s care, 73% felt services relied too heavily on carers, and 72% said they regularly had to advocate to secure appropriate support. The research concluded that many carers feel undervalued, excluded from decision-making, and left carrying significant responsibilities without adequate recognition or support.

The study gathered responses from carers supporting people with:

  • Schizophrenia
  • Bipolar disorder
  • ADHD
  • Autism
  • Complex neurodiverse conditions

Although the sample size was relatively modest, the findings revealed significant and consistent concerns.

Key Findings from the report

Carers Feel Excluded

  • 72% reported being only sometimes involved or not involved at all.
  • 73% felt services relied too heavily on carers.
  • 72% said they had to advocate strongly to secure appropriate care.

Communication Failures

Participants reported poor communication between:

  • Mental health services
  • Assessment teams
  • Social services
  • Mental health liaison teams

Many carers described communications as inconsistent, unclear, and difficult to navigate.

Consent and Confidentiality

A recurring concern was that confidentiality procedures are often applied rigidly, preventing carers from sharing vital information during crises.

Carers argued that this can actively undermine effective care.

Quality of Care Concerns

The research found:

  • 90% reported insufficient care.
  • Significant concerns around continuity of care.
  • A strong desire for dedicated care coordinators.
  • Widespread frustration with crisis services.

Crisis Support is Not Working

Many carers reported that:

  • NHS 111 is often inadequate for mental health crises.
  • A&E is frequently unsuitable for people experiencing mental distress.
  • Services remain reactive rather than preventative.

Calls for Change

Recommendations included:

  • Better crisis pathways
  • Improved coordination between services
  • More trauma-informed approaches
  • Greater therapeutic support
  • Increased family involvement
  • Better support for neurodiverse individuals

The presentation sparked considerable discussion, with many attendees noting that the findings reflected experiences they had encountered for years.

Carers Speak Out: Frustration, Trauma and the Need for Change

One of the most powerful aspects of the meeting was hearing directly from carers.

Several participants reflected on decades of involvement with mental health services and expressed concern that despite repeated reviews, consultations, and reforms, many of the same issues continue to persist.

Common themes included:

  • Institutional racism
  • Poor communication
  • Exclusion of carers
  • Over-medicalisation
  • Lack of trauma-informed care
  • Inadequate support during crises

A number of attendees emphasised that families often become de facto care coordinators, managing appointments, services, medications, and crises while receiving little support themselves.

One participant observed:

“They plan, medicate and treat. We care. Our worlds don’t meet.”

Others highlighted the impact of racial trauma and the way mental health services can fail to recognise the cultural context of distress.

Open Dialogue: A Different Way Forward?

Ren Reins introduced the concept of Open Dialogue, an internationally recognised approach to mental health care that focuses on relationships, networks, and collaborative conversations.

Open Dialogue aims to:

  • Bring families and professionals together
  • Reduce fragmentation between services
  • Focus on lived experience
  • Build trust
  • Improve recovery outcomes

Ren explained that major NHS-funded trials are underway and encouraged carers to learn more about the approach.

The discussion generated significant interest, particularly from attendees looking for alternatives to traditional medical models of care.

Nearest Relative Resources Project

Professor Judy Laing from the University of Bristol provided an update on an innovative project designed to support family members and carers who hold, or may hold, responsibilities under the Mental Health Act’s “Nearest Relative” provisions. Drawing on previous research with carers and mental health professionals, Professor Laing explained that many family members who find themselves in the Nearest Relative role often receive little information, guidance, or emotional support despite carrying significant legal responsibilities. In response, her team secured funding to develop a free, co-produced online resource that helps carers understand their rights, responsibilities, and options when supporting a loved one through mental health assessment, detention, and treatment.

Developed in partnership with carers, family members, mental health professionals, and organisations including Mind, Rethink Mental Illness, and Carers Trust, the website provides practical information, downloadable tools, guidance for conversations with professionals, and resources to help carers look after their own wellbeing. Professor Laing stressed that the project has been shaped directly by the experiences of those who have undertaken the role themselves, ensuring that the guidance reflects the realities and challenges carers face in practice rather than simply explaining legal processes.

The project emerged from research identifying significant gaps in information and support for people carrying out the “Nearest Relative” role.

What Has Been Developed?

The project has created a free online resource containing:

  • Information about legal rights
  • Guidance on conversations with professionals
  • Practical tools for meetings
  • Support for carers’ wellbeing
  • Resources explaining upcoming legal changes

The materials have been co-produced with carers and family members.

Questions Raised

How are diverse communities included?

Participants asked how the project ensures equity and accessibility.

Professor Laing explained that:

  • People from ethnic minority backgrounds have contributed to development.
  • Resources are being improved to increase accessibility.
  • Additional funding is supporting work around inclusion and accessibility.
  • Translation and alternative formats are being explored.

How is the project promoted?

Discussion focused on ensuring communities are aware of available support rather than resources existing only online.

Professor Laing outlined efforts involving:

  • Mind
  • Carers Trust
  • Mental health services
  • Local media
  • Carer forums

How will the new Nominated Person role protect carers who have traditionally been involved in supporting a loved one?

Several participants expressed concern that replacing the Nearest Relative role could unintentionally weaken the involvement of family members who have historically provided substantial support during periods of mental ill-health. Questions were raised about situations where a person may choose someone other than their primary carer to act as their Nominated Person, potentially reducing carers’ ability to access information or participate in key decisions. Professor Laing acknowledged that these concerns have been raised by many carers and explained that the practical details of how the new system will operate are still being developed. She stressed the importance of carers contributing their experiences to ensure that future guidance recognises the valuable role families often play in supporting recovery and maintaining continuity of care.

What support is available when professionals fail to recognise or understand carers’ legal rights?

Attendees also discussed the reality that many mental health professionals are not always familiar with the legal powers and rights associated with the Nearest Relative role. Participants described situations where carers were excluded from discussions, not informed of important decisions, or felt unable to challenge professional opinions because they lacked confidence in their understanding of the law. In response, Professor Laing highlighted that one of the main objectives of the Bristol resources project is to bridge this knowledge gap by providing practical tools, suggested questions, and clear explanations of carers’ rights. She noted that the project is also developing resources aimed at professionals themselves, with the goal of increasing awareness and ensuring that carers’ legal rights are better understood and respected across mental health services.

Attendees welcomed the commitment to increasing visibility.

Electronic Health Records and Future Developments

Dr Anna De Simoni, an Academic GP and Associate Professor of Primary Care at Queen Mary University of London, presented an early-stage research proposal focused on how electronic health records could be used to better understand and map the social support networks surrounding people living with multiple long-term health conditions.

Dr De Simoni sought direct feedback from carers to help shape the project before a formal funding application is submitted. She explained that while healthcare professionals can usually identify a patient’s next of kin and household members through existing GP records, they often have very limited understanding of the wider support networks that play a vital role in a person’s wellbeing.

These networks may include family members, neighbours, friends, faith groups, community organisations, carers, and others who provide practical and emotional support. The research aims to explore whether technology and electronic health records can help healthcare professionals better recognise these support systems and use that information to improve care planning, reduce unnecessary hospital admissions, and enhance quality of life for people living with complex health conditions.

The discussion generated considerable interest, particularly regarding:

  • Information sharing
  • Integration across services
  • Support for carers
  • Data protection concerns
  • Improving continuity of care

Several participants expressed enthusiasm about the potential benefits while also raising questions regarding privacy and access to NHS information.

Questions and Answers from Dr Anna De Simoni’s Presentation

Q: What problem is this research trying to solve?
A: Dr De Simoni explained that healthcare professionals often know very little about the wider support network surrounding a patient. While medical records may identify a next of kin or people living in the same household, they rarely capture the full picture of who is actually providing practical, emotional, or day-to-day support. The project aims to better understand these social networks and use that information to improve care planning and patient outcomes.

Q: Who is the research aimed at?
A: The initial focus is on people living with multiple long-term health conditions, including illnesses such as COPD and other complex health needs e.g mental health. The project seeks to understand how stronger recognition of support networks could improve quality of life, reduce hospital admissions, and support people to remain independent for longer.

Q: How would patients contribute information about their support network?
A: The proposal includes the use of a Universal Care Plan through the NHS App. Patients would be able to enter information themselves about what matters to them, who supports them, how they prefer to be treated, and what should happen if their health deteriorates. This information could then be viewed and updated by relevant healthcare professionals.

Q: What role could carers play within the proposed system?
A: Participants highlighted that carers often provide the majority of practical support but are frequently invisible within healthcare systems. The proposed approach could make carers more visible by helping professionals understand who is involved in supporting a patient and what role they play in maintaining wellbeing and independence.

Q: How will patient confidentiality and data protection be managed?
A: Concerns were raised about privacy and the security of NHS data. Dr De Simoni explained that information governance, GDPR compliance, and data protection would be central to the project. Specialists in privacy and information governance would be involved to ensure that any information collected is handled safely, appropriately, and with proper consent.

Key Discussion: Why Are Carers Still Fighting the Same Battles?

A recurring theme throughout the meeting was the sense that many challenges identified today are the same challenges carers raised ten or twenty years ago.

Questions included:

  • Why are services still fragmented?
  • Why do carers continue to feel excluded?
  • Why are communication problems so persistent?
  • Why is trauma often overlooked?
  • Why do inequalities remain entrenched?

Participants reflected on whether the issue is primarily one of resources, leadership, service design, or culture.

Many agreed that meaningful change requires carers to remain actively involved in shaping policy and service delivery.

Resources and Links Shared During the Meeting

Mental Health Act Research Study

Email:
nrmha@ucl.ac.uk

Eligibility:
People aged 16+ who have experience supporting someone assessed or detained under the Mental Health Act.

Nearest Relative Resources Website

Welcome to the resources

Nearest Relative Resources Impact Report

https://bpb-eu-w2.wpmucdn.com/blogs.bristol.ac.uk/dist/a/1212/files/2026/05/2026-05-Nearest-Relatives-Resources-impact-report.pdf

POPs Facebook Group

https://www.facebook.com/groups/POPSUnitedKingdom

A carers support group recommended during discussion as a source of peer support and shared experience.

Final Reflections

The May 2026 Ethnic Mental Health Carers Forum highlighted both the challenges carers continue to face and the determination across the sector to improve outcomes.

From Mental Health Act reform and carers’ rights to innovative approaches such as Open Dialogue, the meeting demonstrated the importance of bringing together lived experience, research, policy, and practice.

Several speakers reminded attendees that change often begins with carers sharing their stories, participating in research, challenging poor practice, and helping shape future services.

The forum remains an important space where those voices can be heard.