Tag Archives: co production

Triangle of Care Community Meeting: December 2025 update

By Matthew McKenzie – TOC Community Chair

Our final Triangle of Care (ToC) Community Group meeting of the year brought together carers, professionals, and ToC members from across the UK to share updates, raise concerns, and discuss priorities for 2026 and beyond. Although Microsoft Teams provided some surprises, we made it work, thanks to teamwork and patience. The conversation was rich, heartfelt, and often very moving.

1. Opening & Agenda

As chair of the meeting, I acknowledged technical teething problems as the group used Teams for the first time in this format. Mary (ToC Programme Lead) welcomed attendees and explained the privacy-driven decision to hide email addresses, which also unfortunately hid attendees’ names. A fix will be implemented before the January meeting.

The agenda included:

Triangle of Care national updates (Mary)
Carer co-production and lived experience input (Matthew)
Surrey & Borders’ co-production example (postponed)
Research priority-setting presentation (Richard, University of Manchester)
Carer questions and discussion

2. Triangle of Care National Update (Mary)

Mary provided a comprehensive end-of-year update structured around ToC’s three priority areas for 2024–25.

2.1 Embedding the Relaunched Triangle of Care Framework

Growth & progress

16 new members have joined the scheme since April, bringing ToC membership to over 80.
The first Welsh hospital achieved a ToC Star Award, prompting the creation of a new Welsh-language logo and Welsh materials.
A social care pilot is underway with Livewell South West, with West Hertfordshire Teaching Hospital reviewing ToC criteria for an acute setting.
Nine Star Awards have been achieved this year, with a further 12 annual reviews approved. Many more annual reports are pending review before year-end.

Standardising data
Mary emphasised the push for consistent reporting across Trusts, including:

numbers of carers identified
uptake of carer awareness training
numbers of carer champions

This will help build a national picture of impact.

Webinars
ToC’s Lunch & Learn series continues, with the recent Carers Rights Day webinar (in partnership with University of Bristol) focusing on the Nearest Relative role under the Mental Health Act (MHA). Resources are available via Carers Trust’s YouTube channel.

2.2 Young Carers: Identification & Support

A major update was the successful national policy win relating to young carers and the Mental Health Act.

Mental Health Act Reform – Safety Net for Young Carers

Following campaigning by Carers Trust, the Young Carers Alliance, and ToC members who wrote to MPs:

Government has agreed to update the MHA Code of Practice to require:
- identification of children when an adult is detained
- sharing of information about available support
- referrals for young carer needs assessments
Updates to advance choice documents will require practitioners to ask about dependent children.
Expected implementation: Summer 2026.

This win was warmly welcomed by the group.

2.3 Racially Minoritised Carers & PCREF

Mary updated members on ToC’s work to ensure carers are fully represented in the Patient & Carer Race Equality Framework (PCREF).

Key updates

A national Task & Finish Group has now completed its review of the first four ToC standards; the final standard is underway.
Piloting of new culturally sensitive criteria is planned with 10 NHS Trusts beginning April 2026.
Example of early good practice: Livewell South West is implementing a new “essential data template” that includes carers, enabling services to better identify and support racially minoritised carers.
Carers Trust is calling for a statutory duty for NHS mental health providers to implement PCREF in full, including community governance.

2.4 Changing the Narrative on Care – New Research

Mary introduced new research (supported by the Health Foundation and Oxfam GB) titled Changing the Narrative on Care, highlighting:

Although 80% of the public value unpaid care, this does not translate into policy action or investment.
Three recommended reframes:
1. Care is a universal experience, not a niche issue.
2. No care without support, make support visible and tangible.
3. Care is a partnership between families, communities and systems—not something families must do alone.

The full report is available on Carers Trust’s website.

3. Carer Involvement, Co-Production & Lived Experience (Matthew McKenzie)

I then presented an in-depth reflection on the value of authentic carer involvement, drawing on his lived experience and his role working with multiple NHS organisations.

Key points included:

Carers are not passive observers, they hold critical lived knowledge that improves services.
Real co-production goes beyond consultation; carers must be equal partners in shaping policy, documentation, training, and strategic decisions.
Examples Matthew gave from his own involvement:
- redesigning welcome packs and leaflets
- addressing confidentiality misapplication
- involvement in recruitment panels
- delivering training to staff at induction
- reviewing complaints and compliments themes
- advising on discharge processes and family-inclusive safety protocols
- participating in research steering groups
Carers’ insight is especially essential in safeguarding, quality boards, and identifying service gaps often invisible to professionals.

4. Surrey & Borders Co-Production Example

A planned presentation from Surrey & Borders was postponed, as the relevant colleague could not attend with materials. They hope to present at a future meeting.

5. Research Priority Setting in Secure & Forensic Mental Health (Richard Kears)

Richard introduced a national project with the James Lind Alliance (JLA) aiming to identify the top 10 research priorities for secure and forensic mental health services across England, Scotland and Wales.

Who is the survey for?

Carers
People with lived experience of secure/forensic services
Staff working in these services
Anyone indirectly connected (victims, families)

Purpose

To ensure future mental health research is led by the real concerns of those most affected, not only by academics or pharmaceutical interests.

Process

National survey gathering research questions.
Analysis to identify common themes.
Second, more focused survey to refine priorities.
National workshops with carers, staff and people with lived experience to finalise the top 10.

A QR code and flyer were shared for distribution. The group expressed strong support.

6. Attendee Discussion & Questions

This was the richest section of the meeting, with many heartfelt contributions. The themes below reflect the key concerns raised.

6.1 Scotland & UK-wide ToC Alignment

A carer asked why Scotland’s ToC framework is separate and not integrated into the UK ToC accreditation model.
Mary explained:

Scotland currently uses ToC only as a free policy framework.
Implementing the accreditation model in Scotland would require groundwork to assess willingness and ability of providers to fund membership.
Integration is being discussed but is not imminent.

6.2 Clarity on Co-Production

Several carers voiced concerns that:

“Co-production” is often used as a buzzword.
Some NHS Trusts label work as co-produced after completing it.
Carers need clarity on what ToC means when using the term.

Mary responded that ToC uses a ladder of engagement, distinguishing:

carer engagement
carer involvement
full co-production

Carers Trust is developing a formal principles-based statement on involvement for future meetings.

6.3 Older Carers: Visibility, Support & Inequalities

The majority of carer questions focused on the unmet needs of older adult carers, many of whom are supporting people with severe mental illness—not dementia—and often have been caring 20–40 years.

Attendees reported:

Feeling “invisible” within both policy and services.
Being incorrectly grouped under “older carers = dementia”.
Their own poor health affecting their caring ability.
Increasing struggle to get responses from professionals.
Serious concerns about who will care for their loved ones when they die.
Feeling less heard as they age, compared with younger carers or newer voices.

One carer (age 78) shared:

“I can’t retire from caring. Benefits stop at 65, but the caring doesn’t.”

Another said:

“We have to shout louder as older women to be heard—and still we aren’t.”

Mary acknowledged the seriousness of these issues and committed to:

bringing older carers’ concerns into ongoing ToC work
exploring dedicated guidance and better mainstreaming within the ToC standards
sharing good practice on carer contingency planning in upcoming meetings

I have placed the guide below

Click to access Carer-Contingency-Planning-in-the-Universal-Care-Plan-Guidance-V1.0.pdf

I also reiterated the group’s role in surfacing policy gaps and influencing future national lobbying.

6.4 Carer Registration & Meeting Access

Several carers raised issues with:

The length of the ToC sign-up form
Not receiving meeting links despite signing up
Verification barriers when joining Teams

Mary agreed to:

review and shorten the form
clarify which fields are optional
address email deliverability issues
adjust MS Teams settings to reduce joining friction while maintaining security

6.5 Concerns About Confidentiality Misuse

One carer reported that in a CQC meeting at an NHS Trust, raising questions about communication was dismissed as “confidentiality”, preventing meaningful dialogue.
I then encouraged carers to bring such examples into:

ToC Star peer reviews
Carer involvement forums
Local advocacy routes

He noted that misuse of confidentiality is a common and unacceptable barrier and must be challenged.

6.6 Petition on Antipsychotic Medication Research

Carers highlighted concerns about:

long-term prescribing of antipsychotics
lack of regular medication review
inadequate research into long-term effects

A carer shared a petition calling for investigation of psychiatric medications. Richard noted that he had signed and shared it previously.

7. Closing Remarks

Matthew thanked all attendees for their honesty, passion and persistence:

“Carers’ voices shape policies and improve care. That is exactly what this group is here to do.”

Mary acknowledged:

the importance of every concern raised
the need to better support older carers
improvements to ToC communications and meeting accessibility
that the next meeting will be in January (provisionally 19th)

The meeting closed with gratitude from carers who said they felt heard, supported, and connected.

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

Arriving and Opening Reflections

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Locksmiths Animation and Alumni Showcase

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

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

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

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

Workshop One – Working Together in Risk and Safety

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

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

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

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

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

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

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

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

Workshop Two – Co-Production and Carer Involvement

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

I met others who had recently completed the course.

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

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

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

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

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

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

Afternoon workshop

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

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

Celebrating Archievements

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

Reflections and Looking Ahead

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

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

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

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

Ethnic mental health Carer Forum : October Update 2025

By Matthew McKenzie, Facilitator, National Ethnic Mental Health Carer Forum

Introduction: A Forum that Connects and Challenges

As the facilitator of the National Ethnic Mental Health Carer Forum, I never take for granted how special these sessions are. Each month, carers, professionals, and researchers from all over the UK log in to share knowledge, raise awareness, and push for change in how mental health services understand and support ethnic minority communities.

Our October 2025 session was a powerful one. Falling on the last day of Black History Month, it brought together crucial themes on race equality, co-production, research, and carer visibility.

We heard from two key areas shaping mental health equity right now:

The OSMOSIS Project, led by Dr. Jacqueline Sin and Sharon Galliford, focusing on developing social care-based support for carers of people with psychosis.
The Patient and Carer Race Equality Framework (PCREF), presented by Aboobaker Bhana, Equality and Involvement Manager for South West Yorkshire Partnership NHS Foundation Trust.

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Lewisham, Southwark & Lambeth carer forum update October 2025

The recent Carers Forum brought together unpaid carers, health professionals, and community organisations from across South London to share updates, experiences, and ideas for improving mental health support. The event, chaired by Matthew McKenzie, created a safe and open space for carers to connect, exchange information, and have their questions heard by local health leaders.

Setting the Scene

Matthew opened the session by welcoming carers from across Lambeth, Lewisham, and Southwark. He spoke about the importance of providing carers with dedicated time to hear from service providers, particularly those supporting someone with mental ill-health and to ensure their voices shape local mental health strategies.

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What Makes for Meaningful Carer Involvement?

By Matthew McKenzie FRSA BEM, Chair, Triangle of Care Community Group

This week’s Triangle of Care Member Webinar, hosted by Carers Trust, which focused on a vital question: What makes for meaningful carer involvement?

We heard from across the Triangle of Care network, these being carers, professionals, and trust representatives coming together to share what genuine involvement looks like in practice.

I spoke about my own lived experience as a carer, supporting two non-verbal brothers with autism and my late mother with mental health challenges and how this journey has shaped my advocacy for stronger partnerships between carers and professionals.

Over the years, through the Triangle of Care, I’ve seen how much difference early and equal involvement can make.

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Lewisham, Southwark & Lambeth Mental Health carer forum – June 2025 update

About the Forum:
The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.

Carers Week Collaboration Discussion

The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.

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Greenwich Mental Health carers forum update June 2025

Why Unpaid Carers Should Join Our Mental Health Carers Forum and Why Oxleas & Our Local Authorities Should Listen

By Matthew McKenzie

Caring for a loved one with mental health needs is a journey full of challenges, isolation, and too often lack of support. That’s why we run a dedicated Mental Health Carers Forum with Greenwich Carers Centre that brings together unpaid carers from across Greenwich and sometimes other boroughs since Oxleas covers Bromley and Bexley.

In our most recent forum, carers opened up about what it’s really like to navigate services and support their loved ones. The message was clear: unpaid carers are doing more than ever often alone and we need to work together to make sure they are not left behind.

The Power of Peer Support

One carer said:

“I’m a sandwich carer — looking after my elderly parents and my daughter with complex needs. Groups like this are a lifeline. It’s a space to share, learn, and recharge.”

For many carers, peer support is one of the few places where they are truly heard. Another participant explained:

“It helps so much to hear from others going through similar things. It’s the only way I know what services are available and what’s changing.”

Challenges That Carers Face

Through the forum, we heard repeated concerns:

Lack of joined-up care between GPs and mental health services
Delays in care planning and assessments — or carers being excluded altogether
Confusing systems — carers are often left chasing up GPs or social workers themselves
Failure to take carers’ expertise seriously in assessments and planning
Emotional strain — many carers at breaking point, needing better respite and emotional support

One mother of three autistic children shared:

“I told them my son cannot tolerate bright light that’s why the curtains were drawn. But the assessor just complained about the curtains and parking. They didn’t listen to what my son really needs.”

Presentation: Advocating for a Loved One During and After Mental Health Crisis

Matthew McKenzie delivered a detailed presentation on how unpaid carers can effectively advocate for their loved ones, particularly around mental health services.

Key points included:

Carers are not just supporters, they are also advocates for their loved ones
Building relationships with key professionals (GP, care coordinator, psychiatrist, social worker) is crucial
Carers should keep records of symptoms, interventions and communications to support advocacy
During a crisis, carers should:
- Stay calm
- Be factual about symptoms and risks
- Be assertive (but respectful) in requests for urgent action
- Request risk assessments and ask for information to be recorded
- Understand confidentiality rights and use carers’ rights under the Care Act
The importance of self-care for carers, advocacy can be exhausting, and carers must seek peer support and breaks
Carers should also use the complaints process and escalate concerns when services fail

A Call to Oxleas NHS and Local Authority

We know big changes are coming, NHS England reorganisations, funding pressures, staff reductions. But one thing won’t change: the system depends on unpaid carers.

That’s why we urge Oxleas NHS Trust and the local authorities to:

✅ Regularly engage with this forum to hear carers’ voices
✅ Ensure carers are meaningfully included in care plans and reviews
✅ Offer more training and support for staff on carer involvement
✅ Improve clarity on who carers can contact in a crisis
✅ Work with us to strengthen co-production, not just in theory, but in practice

As one member put it:

“If the services won’t be there in full anymore — then carers will have to do even more. But we can’t do it if we’re broken.”

Join Us

If you’re an unpaid carer supporting someone with mental health needs, whether you’re new to caring, or have years of experience, please come along.

You’ll find a space to share, learn advocacy skills, and connect with others who truly understand. We also run a peer WhatsApp group, ask if you’d like to join.

Together we are stronger and louder. The more carers attend, the harder it is for services to ignore us.

For more info or to attend the next forum: contact

info@greenwichcarers.org
0300 300 2233

Ethnic mental health Carer Forum Update May 2025

Quick update on ethnic mental health carer group

The meeting focused on carer involvement and representation across different regions, with participants discussing their roles in supporting carers and addressing discrimination. The main focus for this meeting was on “What does good look like?” when it comes to Triangle of Care and PCREF.

The group explored the Triangle of Care initiative and its five key elements, including discussions about medication-related challenges and the need for better communication between healthcare providers and carers. The conversation ended with conversations about improving carer support systems, including the importance of advocacy, training, and creating safe spaces for carers to share concerns confidentially.

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Cygnet’s Co-Production in Commissioning Conference 2025

On May 1st, 2025, Cygnet Health Care hosted its landmark Co-Production in Commissioning Conference at the iconic Villa Park, Birmingham. More than just a professional gathering, the event was a manifesto for a more inclusive, compassionate, and equitable model of care, driven by people with lived experience, carers, clinicians, and commissioners alike.

Packed with powerful keynotes, practical models, and heartfelt stories, the day was as emotionally resonant as it was strategically focused.

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