Author Archives: mmckenz11

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About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Hospital Carer Discharge Meeting – January Update 2026

Chair: Matthew McKenzie

Purpose of the Meeting

I chaired this meeting to bring together carers’ organisations, hospital representatives, commissioners, and system partners to share updates on how unpaid carers are being identified, supported, and involved in acute hospital settings. While hospital discharge was a central theme, I emphasised that meaningful carer involvement must begin at admission and continue throughout a person’s hospital journey and transition back into the community.


Attendance

  • Matthew McKenzie – Chair
  • Representative, Unpaid Carer / Healthwatch
  • Representative, Greenwich Carers Centre
  • Representative, Ealing Carers
  • Representative, Lambeth Carers Hub
  • Representative, Richmond Carers Centre
  • Representative, Harrow Carers
  • Representative, Camden Carers
  • Representative, Imago Carers Services
  • Representative, North Central London Carers Project
  • Representative, Local Authority Commissioning
  • Representative, Hospital Patient Experience Lead

(Apologies were received from additional ICB and system partners.)

Unpaid Carer / Healthwatch Representative

The unpaid carer representative shared lived experience insights highlighting that carers are still inconsistently identified across primary care and hospital settings. While there are pilots, policies and system intentions in place, carers frequently report feeling excluded from discussions about care and discharge planning.

They described how carers often struggle to obtain timely and accurate information, particularly during periods of crisis. Many carers are left unsure who to contact within hospitals, and communication is often fragmented or reactive rather than planned.

The representative also noted that progress frequently depends on individual staff champions rather than embedded systems. Without consistent hospital-based carer support, carers are left to advocate for themselves at times when they are already under significant emotional strain.


Lambeth Carers Hub

Lambeth Carers Hub provided a detailed update on their hospital-based carers support service operating across King’s College Hospital and Guy’s & St Thomas’. Their work focuses on identifying unpaid carers early, offering emotional and practical support, and ensuring carers are meaningfully involved in discharge planning and decision-making. Key activities include ward rounds, attendance at discharge and multidisciplinary meetings, safeguarding support, advocacy, and referrals into adult social care and community-based services.

They emphasised that having a consistent physical presence within hospitals has been critical to building trust with both carers and clinical staff. This approach has led to increased referrals, earlier engagement with carers, and improved communication between carers and hospital teams. The Hub also delivers carers awareness training to hospital staff, helping professionals better understand carers’ rights and roles, and creating internal champions within teams.

Despite strong outcomes, ICB working with Lambeth carers hub raised serious concerns about sustainability. Current funding for the hospital-based service is due to end in March, with no guarantee of continuation. They stressed that losing this service would represent a significant step backwards for carer involvement in hospitals, particularly given the clear evidence that early identification and support reduce carer stress and improve discharge outcomes.


Richmond Carers Centre

The Richmond Carers Centre representative explained that their service currently operates in a largely reactive capacity, with referrals typically received at or near the point of discharge. Support includes emotional support, carers’ rights workshops, dementia-focused information sessions, carers assessments and financial guidance.

They noted that carers often approach the service feeling overwhelmed following discharge, having had limited involvement in planning while their loved one was in hospital. This can increase pressure on carers once the person returns home.

The representative acknowledged that the absence of a regular hospital presence limits early engagement with carers. Opportunities were identified to strengthen strategic links with the Integrated Care Board and learn from boroughs where hospital-based models are already established.


Greenwich Carers Centre

The Greenwich Carers Centre representative reported that while carers often experience poor communication from hospital staff and feel excluded from discharge planning, the Centre plays a key role in supporting carers through these challenges. Many carers approach Greenwich Carers feeling anxious or overwhelmed after receiving late or unclear information about discharge, and the service works quickly to help them understand their rights and options.

As a small organisation without a permanent hospital presence, Greenwich Carers is frequently brought in once situations have already escalated. Despite this, the team provides strong advocacy and practical support, including contacting hospital staff on carers’ behalf, helping carers articulate concerns, and ensuring their voices are heard wherever possible.

The representative also highlighted the Centre’s commitment to empowering carers by supporting them to prepare questions, understand processes, and engage more confidently with professionals. While acknowledging that carers should not have to carry this burden alone, Greenwich Carers continues to offer reassurance, guidance and emotional support at some of the most stressful points in a carer’s journey.


Greenwich Council – Commissioning

The Greenwich commissioning representative provided a detailed update on current and planned work to review and re-commission carers support services, with contracts due to end in 2027. A central aim of this work is to gain a much clearer understanding of carers’ lived experiences across the whole system, including primary care, hospitals, discharge pathways and support once people return home. Hospital engagement and discharge were identified as critical pressure points for carers and a priority area for learning.

The representative emphasised that carers’ voices must shape future commissioning decisions, not just through surveys but via direct engagement with carers in existing groups, forums, workshops and one-to-one conversations. There was a clear call-out to partners to help identify opportunities to meet carers where they already are, including within community groups, peer support spaces and carers organisations. This engagement will help commissioners understand what is and is not working, and where carers experience the greatest barriers.

An update was also provided on work relating to the hospital discharge standard operating procedure developed across South East London. While Greenwich did not take part in earlier pilots, the commissioning team is now exploring how this resource can be implemented locally in a way that is meaningful and realistic within busy acute settings. This includes building on existing initiatives, such as carers charters and specialist nursing roles, and avoiding approaches that become tokenistic or are not properly embedded.

The representative acknowledged the challenges of engaging hospitals at pace, particularly given operational pressures, workforce constraints and wider system reform. However, they stressed that commissioning has a key role in creating the conditions for improvement by setting clear expectations, supporting partnership working, and ensuring carers are explicitly considered in pathways and service design rather than treated as an afterthought.


Harrow Carers

The Harrow Carers representative shared the impact of losing funding for a dedicated hospital carer support role. When the role existed, there had been strong engagement with discharge teams and improved staff awareness of carers’ rights and needs. Since the funding ended, there is no longer a consistent carer presence within the hospital. This has resulted in reduced engagement with carers and fewer opportunities to influence discharge planning.

The representative stressed that carers value continuity of support from hospital into the community. Without hospital-based roles, carers often experience a sudden and unsupported transition once their loved one is discharged.


Camden Carers

The Camden Carers representative confirmed there is currently no dedicated hospital engagement or discharge support service due to funding constraints. Previous hospital awareness work had to stop, limiting opportunities to identify carers early.

Camden Carers now focuses on community-based support, including carers assessments, information and advice, counselling, employment support and wellbeing services. These services remain well-used and valued by carers.

Attending the meeting was described as helpful for learning about hospital-based models in other boroughs. The representative expressed interest in exploring whether similar approaches could be developed in the future if funding allows.


Imago Carers Services

Imago provided a detailed update on their work supporting unpaid carers across multiple boroughs, with a strong focus on hospital navigation and safe discharge. They currently deliver carers services in Lewisham and the City of London, and are expanding work in other areas, including Havering. In the City of London, Imago works closely with adult social care and hospital discharge teams across several acute trusts, supporting carers whose loved ones are admitted outside their home borough.

A key strength of Imago’s model is their close operational relationship with hospital discharge teams, which allows carers to be identified earlier and supported more consistently through the transition from hospital to home. This includes practical guidance, emotional support, referrals for carers assessments, and rapid follow-up once someone is discharged. Imago highlighted that where they are embedded in discharge pathways, carers experience fewer delays, clearer communication and improved continuity of support into the community.

Imago also reflected on ongoing challenges, particularly that carers are still too often signposted rather than formally referred by hospitals. They are working with commissioners and hospital partners to address this by improving referral processes and developing clearer information for professionals. This includes new resources aimed at hospitals and GP surgeries, focused on carers’ rights, identification, and support within the health system. While progress is being made, Imago stressed that sustainable funding and system-wide commitment are essential to move beyond short-term pilots and ensure carers are consistently recognised as key partners in care.


North Central London Carers Project

The North Central London Carers Project representative provided an update on work taking place across Barnet, Camden, Enfield, Haringey and Islington. The project focuses on improving referral pathways from hospitals and health services into local carers organisations, particularly where staff are unsure which carers service covers which borough.

They described the development of a single referral route designed to make it easier for hospital professionals to connect carers with the correct local support quickly and accurately. This work is intended to address one of the most common barriers carers face: delays and confusion caused by fragmented systems across borough boundaries.

The representative acknowledged that progress is being made in a very challenging environment, with significant pressures on NHS and local authority partners. However, there have been positive developments, including growing engagement from patient experience teams and plans to showcase collaborative work with NHS colleagues at London-wide events, demonstrating that sustained partnership working can lead to meaningful change for carers. This work involves close engagement with hospitals across North Central London, including the Royal Free London Trust (covering sites such as Royal Free Hospital, Whittington Hospital and Barnet Hospital), to strengthen referral pathways and improve carers’ access to local support.


Hospital Patient Experience Representative

The hospital patient experience representative from George’s, Epsom and St Helier Hospitals (GESH) provided a detailed update on progress within their trust to improve identification and support for unpaid carers. This includes the co-production of a carers charter, developed directly with carers, setting out clear expectations for how carers should be recognised and supported.

They outlined the development of a carers policy and standard operating procedures, alongside staff training and e-learning. Carer identification and recording are being embedded into routine hospital audits, helping ensure carers are consistently recognised across services.

Further work includes carer surveys, dedicated carer forums, information boards, and plans to link carer identification to accreditation processes. This approach is intended to move carer involvement into business-as-usual practice and reduce reliance on individual champions alone.

Events and Shared Information

During the meeting, there was shared information about upcoming London-wide events focused on unpaid carers, particularly those aimed at influencing system change and strengthening collaboration between carers organisations and NHS partners. An upcoming Caring Across London event organised through Carers Trust was highlighted as an important opportunity to showcase good practice, hear directly from carers organisations and NHS colleagues, and raise issues around hospital engagement and discharge at a strategic level. Several attendees confirmed they would be attending or were interested in receiving further details.

It was also noted that colleagues from North Central London will be presenting jointly with NHS patient experience representatives at a London-wide carers event, demonstrating collaborative working between carers organisations and hospital trusts. This was shared as a positive example of how partnership approaches can influence wider system thinking and raise the profile of carers within acute settings.

In addition, links and information were shared relating to carers charters, standard operating procedures, hospital discharge toolkits, and evidence submitted to London-level discussions on unpaid carers. I encouraged attendees to review and share these resources within their own organisations and networks, as they provide practical examples that can be adapted locally. I also confirmed that I am happy to circulate any event details, articles or resources discussed so that those unable to attend meetings or events can remain informed and connected.


Useful Links and Further Information

🔹 London-wide Events and Policy Discussions

Caring Across London: Collaborating for Change (Carers Trust Conference)
https://carers.org/conferences/caring-across-london-collaborating-for-change

London Assembly Investigation – Experiences of Unpaid Carers in London
https://www.london.gov.uk/who-we-are/what-london-assembly-does/london-assembly-work/london-assembly-current-investigations/experiences-unpaid-carers-London

BBC News – Coverage of Unpaid Carers in London
https://www.bbc.co.uk/news/articles/c2e1n3rddzro

MyLondon – London’s Hidden Unpaid Carers
https://www.mylondon.news/news/zone-1-news/londons-hidden-unpaid-carers-living-33230856


🔹 Hospital Discharge, NHS and System Guidance

NHS England (London) – Carers and Hospital Discharge
https://www.england.nhs.uk/london/our-work/carers-and-hospital-discharge/

One London – Universal Care Plans (UCP)
https://ucp.onelondon.online/about/


🔹 Carers Rights, Frameworks and Good Practice

Triangle of Care (Carers UK)
https://carers.org/triangle-of-care/the-triangle-of-care

Adult and Young Carers Charter (GESH – George’s, Epsom & St Helier Hospitals)
(Shared in the meeting by the hospital patient experience representative)
📄 Adult-and-Young-Carers-Charter-2025.pdf

🔹 Tools and Platforms Mentioned

Bridgit Care (used by Harrow Carers and others)
https://www.bridgit.care


The next meeting will be in March

Carers Connect Southwark: Why Your Voice Matters More Than Ever

By Matthew McKenzie – A Caring Mind

If you’re an unpaid carer in Southwark, chances are you’re used to putting everyone else first. You support a loved one day in, day out, emotionally, practically, often invisibly. And too often, decisions about “support” for carers are made without carers truly being heard.

Southwark Council is developing its Unpaid Carers Strategy, and they are inviting unpaid carers to take part in upcoming focus groups to share real experiences, which are your lived reality.

As an unpaid carer myself, I know how rare and valuable this opportunity is.

Why having your say is important because

Policies and strategies shape:

  • What support is available
  • How easy (or hard) it is to access help
  • Whether carers feel recognised, supported, and understood

When carers don’t speak up, systems are built around us, not with us. When we do speak up, its a chance to make change becomes possible.

This isn’t about complaining.
It’s about being honest: what works, what doesn’t, and what would genuinely make life easier for carers in Southwark.

Your voice could help shape:

  • Better access to information and services
  • More flexible, carer-friendly support
  • A strategy that reflects the real pressures carers face

A safe, non-judgemental space

One of the most important things about these focus groups is that they are designed to be:

  • Non-judgemental
  • Inclusive
  • Open to carers with any level of responsibility

You don’t need to have all the answers.
You don’t need to be an “expert”.
You just need your experience.

Whether you care full-time, part-time, occasionally, or don’t even label yourself as a “carer” your perspective still counts.

Focus group dates and details

In-person focus groups
📅 24th February
11am – 1pm and 2pm – 4pm
📍 Harriet Hardy Community Centre
Harriet-Hardy Building, Aylesbury Estate, Albany Road, Walworth SE5 0AH

Online focus group
📅 25th February
7pm
💻 Virtual session via Microsoft Teams

How to get involved

You can:

Even attending one session can make a difference — not just for you, but for other carers now and in the future.

A personal note from me

As unpaid carers, we are often exhausted, overlooked, and expected to “just cope”. Opportunities like this don’t come around often.

Why Unpaid Carers Must Be in the Lecture Theatre – Not Just the Waiting Room

By Matthew McKenzie, A Caring Mind (Carers UK Ambassador)

As an unpaid mental health carer, I have spent years navigating hospital corridors, GP practices, care plans, juggling crises, and long silences where carers are too often left out. I am sure unpaid carers are expected to hold families together, while notice early warning signs, and keep loved ones safe. Still I always mention most of us receive no formal training, and our knowledge is rarely recognised as expertise.

That is why recently teaching a module for the Masters course to mental health nursing students at King’s College London felt so important. Not after they qualify. Not once they are overwhelmed in practice. But before they step out into the field. The session took place 15th of January.

Why carer-led teaching matters

Unpaid carers sit at the sharp edge of the mental health system. We see what works, what harms, and what gets missed when professionals don’t fully understand the family context. When students hear directly from carers, learning moves beyond textbooks into real life into the emotional, practical, and ethical realities of care.

Training mental health professionals without carer voices is like teaching navigation without a map.

What I taught: lived experience as learning

The session I delivered was built entirely from a carer’s perspective and centred on one core message: you cannot deliver effective mental health care without working with carers.

The module covered:

  • My lived experience as an unpaid mental health carer
    How I became a carer, the emotional impact, the daily responsibilities, and the toll caring can take on mental and physical health.
  • The hidden impact on carers
    Burnout, stigma, isolation, guilt, and the reality that many carers are supporting professionals while receiving little support themselves.
  • Carers as partners, not problems
    Exploring what happens when carers are ignored – and how outcomes improve when they are listened to, informed, and included.
  • The Triangle of Care
    A strong emphasis on the Triangle of Care framework: the partnership between service user, carer, and professional. I challenged students to see carers as a vital link in the chain, not an optional extra.
  • Carers UK and carer identification
    Highlighting the role of Carers UK in advocacy, rights, resources, and why professionals must help carers identify themselves early so they can access support.
  • Practical skills for future nurses
    Listening without defensiveness, sharing information appropriately, involving carers in care planning, and understanding when carers need support themselves.
  • Interactive discussion and reflection
    Students worked through real-life scenarios, asking: What would I do differently now that I understand the carer experience?

The shift we need in education

Most unpaid carers are not trained for their role. We learn through crisis, exhaustion, and trial and error. Mental health professionals, however, are trained, which means universities have a responsibility to ensure that training includes those of us living this reality every day.

Carer-led teaching builds empathy, improves communication, and ultimately leads to safer, more effective care. When students learn early that carers matter, they carry that mindset into practice.

A final thought

Unpaid carers are already part of the mental health workforce, it’s just the title unpaid, unsupported, and often unheard. So I feel bringing carers into universities is not a “nice extra”. It is absolutely essential.

If we want a mental health system that truly works, we must start by listening to those who never clock off.

Triangle of Care Community Meeting: January 2026 update

By Matthew McKenzie – Triangle of Care Community Chair.

The meeting opened with a welcome to carers, professionals, and partner organisations, reinforcing the importance of the Community Group as a collaborative and inclusive space. The Chair highlighted the ongoing commitment to co-production, ensuring that lived experience remains central to all Triangle of Care development and decision-making.

The purpose of the meeting was outlined, with emphasis on shared learning, constructive challenge, and influencing national work. Members were reminded that discussions within the group directly inform improvements to Triangle of Care standards, guidance, and implementation across services.


2. Triangle of Care Update (with Q&A)

Mary Patel – Carers Trust

The Triangle of Care update focused on how the programme continues to evolve as a learning-led, improvement-focused framework rather than a compliance or inspection tool. Members were reminded that the Triangle of Care is designed to support services to reflect honestly on how well carers are recognised, involved, and supported, and to identify practical actions for improvement.

The update highlighted the growing maturity of the self-assessment and peer review process. Increasingly, organisations are using the framework not only to evidence good practice but to challenge themselves, learn from others, and embed carer partnership more consistently across teams and pathways.

Self-Assessment and Peer Review: What’s Working Well

The self-assessment process continues to be a key entry point for organisations engaging with the Triangle of Care. Where we were updated on how self-assessment encourages teams to pause and reflect on everyday practice, policies, and culture, rather than relying solely on written procedures. When combined with peer review, this reflection is strengthened by external challenge and lived-experience insight.

As part of the update, members were updated on emerging learning from Triangle of Care reports, including self-assessment submissions and peer review feedback. These reports were described as an important source of insight into how carer involvement is experienced on the ground, highlighting both areas of strong practice and recurring challenges across services

NOTE: These include reports going back 6 months, so not all NHS trusts listed

Peer review was described as most effective when organisations approach it with openness and curiosity. Lived-experience peer reviewers play a crucial role in asking different questions, highlighting blind spots, and grounding discussions in real-world carer experience.

A key discussion point was how to balance national consistency with local flexibility. Members acknowledged that while the Triangle of Care provides a shared framework and standards, services operate within different contexts, populations, and resource constraints.

Triangle of care and Patient Carer Race Equality Framework updates

The Triangle of Care and PCREF Phase 2 pilot will be launched in April 2026, to test co-produced specialist guidance to support integration of carers from racially marginalised communities into the Triangle of Care.

Alignment with Wider System Priorities

Members discussed how Triangle of Care activity aligns with broader system developments, including Mental Health Act reform, integrated care, and equality frameworks. There was strong agreement that Triangle of Care should not sit in isolation but be embedded within wider quality improvement, safeguarding, and workforce development agendas.

The need to visibly align Triangle of Care with the Patient and Carer Race Equality Framework was reiterated. Members emphasised that carers must be able to see how equality commitments translate into tangible actions within standards, training, and evidence.

Key points

  • Aligning Triangle of Care with Mental Health Act reform
  • Embedding within wider system and quality frameworks
  • Stronger visibility of equality and race equity

Carer Voice and Evidence of Impact

A recurring theme was the importance of demonstrating impact. Members discussed how services can better evidence carer involvement and experience beyond policies and training records. This includes qualitative feedback, lived-experience insight, and examples of how carer input has influenced service design and delivery.

Emerging Challenges and Areas for Development

The update also acknowledged ongoing challenges, including workforce pressures, digital transformation, and uneven awareness of the Triangle of Care across organisations. Members noted that carer involvement can become fragile during periods of change unless it is firmly embedded in systems and culture.

Summary: Where the Programme Is Heading

The Triangle of Care update concluded with a shared understanding that the programme is well-established but still evolving. The focus for the next phase is on deepening impact, strengthening alignment with equality and legislative change, and supporting services to move from intention to consistent, inclusive practice.

Key discussion points

  • Peer review as a developmental, learning-focused process
  • Balancing national consistency with local flexibility
  • Alignment with Mental Health Act reform and equality frameworks
  • Keeping carer voices central to assessment and review

3. Sharing Experiences as a Peer Reviewer

Carer involved with Avon & whitlshire

A carer presented from her involvement at Avon and Wiltshire Mental Health Partnership NHS Trust, where she is involved as a lived-experience peer reviewer contributing to Triangle of Care.

She shared reflections from her role as a lived-experience peer reviewer. She spoke about the importance of authenticity, trust, and transparency in the peer review process, and how lived experience strengthens both credibility and impact. Her contribution reinforced the value of co-production and highlighted how peer review can challenge assumptions, surface good practice, and promote more carer-inclusive cultures within organisations.

The discussion reinforced that organisational openness and leadership engagement are critical to turning peer review feedback into real change. Members reflected on how hearing directly from peer reviewers deepens understanding of the practical impact of policies on carers.

Q&A / Discussion

  • Members asked how organisations typically respond to lived-experience feedback.
  • The involved carer noted that openness and leadership support were key factors in whether reviews led to meaningful change.
  • Discussion reinforced the importance of preparing services for peer review so that carers feel genuinely welcomed and listened to.

4. Carer Contingency Planning – Presentation and Local Practice

Mary Patel
Local example: Carly Driscoll – Bradford District Care

This session focused on carer contingency planning as a key element of carer support and crisis prevention. The presentation outlined why contingency planning is critical in reducing carer anxiety, preventing emergency admissions, and ensuring continuity of care when carers are unable to continue their role.

link https://carers.org/resources/all-resources/150-carer-contingency-campaign-pack-supporting-carers-and-strengthening-local-care-systems

Carer Contingency Planning (CCP), as championed by Carers Trust, is designed to support carers by planning ahead for times when they might suddenly be unable to continue caring. This might include illness, emergencies, hospitalisation, or other crises. CCP shifts the focus from reactive support during crisis moments to proactive planning that reduces anxiety and prevents avoidable breakdowns in care.

Carers Trust emphasises that CCP is a conversational, personalised process where the carer’s expertise is central. Carers know the routines, preferences, and cues that matter for the person they care for; the goal of CCP is to capture that knowledge in a way that can be shared quickly and effectively with services, families, and emergency responders when needed.

A local practice example from Bradford District Care demonstrated how contingency planning can work in practice, highlighting practical tools, partnership working, and engagement with carers. Discussion explored the benefits of clear, accessible plans, while also acknowledging challenges around awareness, consistency, and uptake

The local practice example demonstrated how contingency planning can be embedded into routine work through partnership approaches and proactive engagement with carers. Members discussed the importance of introducing plans early and reviewing them regularly.

Key features of the Bradford approach

  • Routine integration: CCP discussions happen early, not just in crisis moments
  • Partnership working: Health, social care, and voluntary sector staff work in concert
  • Accessible documentation: Plans are shared in forms that carers can use and update
  • Support for carers: Carers are supported to lead the planning, not be passive recipients
  • Ongoing review: Plans are revisited as needs and circumstances evolve

Benefits seen locally

  • Carers report feeling more confident and less anxious
  • Greater clarity across professionals when carers are unavailable
  • Fewer last-minute, unplanned crises or service escalations
  • Better use of local support networks when official services are stretched

Q&A / Discussion

  • Questions focused on how contingency plans are introduced to carers and reviewed over time.
  • Members raised concerns about low awareness of contingency planning among carers not already engaged with services.
  • Discussion highlighted the need for flexibility, recognising that carers’ circumstances can change rapidly.

5. Carer Contingency Planning – System Perspective

Sara Lewis – SW London ICB

Sara Lewis’s session focused on Carer Contingency Planning (CCP) as a core, preventative element of carer support rather than a reactive or optional add-on. CCP is a structured way of planning for what should happen if a carer is suddenly unable to continue caring due to illness, crisis, exhaustion, or an emergency. At its heart, CCP is about reducing uncertainty and anxiety for carers while ensuring continuity and safety for the person they support.

Sara emphasised that effective CCP recognises carers as partners with expert knowledge of the person they care for. The process supports carers to articulate what matters most, what routines and support are essential, and who needs to be contacted in an emergency. When done well, CCP helps prevent avoidable crises, emergency admissions, and breakdowns in care by making plans visible, accessible, and shared across relevant services.

Accessibility was a major theme, particularly the risks of digital exclusion. While digital tools can be effective, members stressed the need for non-digital options, language support, and culturally appropriate approaches to ensure equity.

Key Takeaways from Sara Lewis’s Session

  • Carer Contingency Planning is preventative, not reactive
  • CCP is built on early, ongoing conversations with carers
  • Plans should reflect what matters to carers and the cared-for person
  • CCP must be accessible, inclusive, and culturally appropriate
  • Digital tools can help, but must not increase exclusion
  • Successful CCP requires shared ownership across services
  • When embedded well, CCP reduces crisis, anxiety, and system pressure

Q&A / Discussion

  • Members questioned how to balance digital innovation with the risk of digital exclusion.
  • Language barriers and accessibility for carers with different communication needs were highlighted.
  • Discussion emphasised that contingency planning must be embedded into standard care planning processes, not treated as optional or additional.

6. Looking Ahead: Priorities for the Community Group

The “Looking Ahead” discussion focused on how the Triangle of Care Community Group can continue to influence meaningful change for carers in an evolving policy and practice landscape. Members reflected on the increasing complexity of health and care systems and the importance of ensuring that carers are not left behind as reforms, digital transformation, and workforce pressures accelerate.

A strong theme throughout the discussion was visibility, making carer involvement, equality, and partnership explicit in practice, evidence, and outcomes. Participants emphasised that carers must not only be recognised in principle but experience consistent involvement and support in real-world settings. The group agreed that the next phase of work should strengthen both strategic influence and practical implementation.

Mental Health Act Reform and Carer Involvement

Members discussed the implications of upcoming Mental Health Act reform, particularly around carers’ rights, information-sharing, and involvement in decision-making. There was recognition that Triangle of Care principles provide a strong foundation for supporting services to meet new expectations, but that further work will be needed to translate legislation into everyday practice.

The group highlighted the risk that carers could be inconsistently involved if workforce understanding is weak or if systems focus narrowly on legal compliance. Proactive guidance, training, and examples of good practice were seen as essential to ensure carers are meaningfully included rather than consulted as an afterthought.

Equality, Race Equity, and Inclusion

A central priority looking ahead is ensuring that Triangle of Care activity visibly aligns with the Patient and Carer Race Equality Framework (PCREF). Members stressed that carers from racialised and marginalised communities often face additional barriers to involvement, including mistrust, cultural misunderstandings, and unequal access to support.

The group agreed that equality must be embedded into standards, peer review evidence, and training—not treated as a parallel or optional agenda. This includes capturing meaningful data, listening to diverse carer voices, and ensuring culturally responsive practice is clearly demonstrated.

Workforce Training and Education

Workforce development was identified as a critical lever for long-term change. Members highlighted the need to strengthen carer awareness training across all roles, particularly for staff new to mental health and social care settings. Without this foundation, carer involvement remains inconsistent and dependent on individual attitudes rather than organisational culture.

There was strong support for influencing pre-registration education, including universities and training providers, to embed carer awareness earlier. This was seen as an opportunity to normalise partnership with carers from the start of professional careers rather than trying to retrofit it later.

Key points

  • Strengthening carer awareness across the workforce
  • Embedding Triangle of Care principles early in training
  • Influencing universities and pre-registration pathways
  • Moving from individual goodwill to system-wide culture change

Digital, Data, and Accessibility

Digital transformation featured prominently in the discussion, with members acknowledging both its potential and its risks. While improved data systems and digital tools can support information-sharing and coordination, there was concern that carers without digital access or confidence may be excluded.

Participants emphasised that digital solutions must be designed inclusively, with non-digital alternatives always available. Data collection should support understanding of carer experience and inequality, not become a barrier to support.

Key points

  • Digital tools should support, not replace, relationships
  • Risk of digital exclusion for some carers
  • Importance of non-digital alternatives
  • Using data to improve equity, not reinforce gaps

Young Carers and Marginalised Groups

Supporting young carers and carers from marginalised communities was highlighted as a continuing priority. Members noted that these groups are often under-identified and less likely to be involved in care planning or decision-making, despite carrying significant caring responsibilities.

The group agreed that future work should focus on visibility, early identification, and tailored approaches that recognise the specific needs and challenges faced by these carers. Partnership with education, community, and voluntary sector organisations was seen as essential.

Key points

  • Improving identification of young carers
  • Addressing barriers faced by marginalised carers
  • Tailored, age-appropriate and culturally sensitive support
  • Stronger partnership working beyond health services

Collective Commitment Moving Forward

The discussion concluded with a shared commitment to using the Community Group as a platform for influence, learning, and accountability. Members recognised the value of continuing to share practical examples alongside strategic discussion, ensuring that Triangle of Care principles are translated into everyday practice.

Looking ahead, the group aims to remain proactive, inclusive, and responsive—supporting services to recognise carers as equal partners and ensuring that no carer is left unseen or unsupported as systems evolve.

Key discussion points

  • Preparing for Mental Health Act reform
  • Embedding the Patient and Carer Race Equality Framework
  • Improving workforce training and education pathways
  • Supporting young carers and marginalised communities
  • Improving data and digital systems without exclusion

As Chair I thanked contributors and reaffirmed the importance of continued collaboration to ensure carers are recognised as equal partners in care, with Triangle of Care principles translated into meaningful practice across services.

For those interested to hear more about triangle of care, see details below

Speaking as a Carer: Reflections from the Carers’ Wellbeing Conference, London

By Matthew McKenzie

I’ve spoken at many events over the years, but standing in a room full of carers always is a great experince differently. The room filled with lived experience, this time paid and unpaid carers carrying invisible weight of caring stories that rarely get space.

The Carers’ Wellbeing Conference in London, organised by Carers’ Mind CIC, was a moment where carers were allowed to be people first.

The event was hosted at The Abbey Centre, a welcoming community venue in Westminster that provides vital space for local groups, charities, and events focused on wellbeing, inclusion, and social support.

CarersMind CIC is a community-interest organisation dedicated to improving the wellbeing, visibility, and support of both paid and unpaid carers. Through accessible events, practical training, and open conversations about mental health, CarersMind CIC creates safe spaces where carers are recognised as individuals

The Impact of Caring on Mental Health

When I was invited to speak about “The Impact of Caring on Mental Health and What Actually Helps”, I didn’t hesitate. Caring has shaped every part of my adult life. It has taught me empathy, patience, advocacy, but it has also exposed me to burnout, trauma, guilt, and long stretches of isolation.

Too often, carers are spoken about rather than with. This conference made a conscious effort to centre carers’ voices, not as an afterthought, but as expertise.

The Room Told Its Own Story

At the conference, there was no pressure to “cope better” or “be more resilient” without acknowledging the cost. Instead, there was honesty.

Carers spoke about:

  • Burnout that creeps in quietly
  • Guilt for needing rest
  • The emotional toll of long-term responsibility
  • Feeling unseen by systems that rely on them

These were truths that deserved to be heard without judgement.

What Claire Shelton Shared at her session

Claire spoke openly about how caring impacts mental health carers over time, not just during moments of crisis. she talked about trauma that doesn’t announce itself, about stress containers that overflow slowly, and about how carers often normalise distress because “there’s no other option.”

Most importantly, she focused on what actually helps:

  • Being recognised as a carer both formally and emotionally
  • Access to peer support, not just professional services
  • Practical tools that reduce isolation
  • Boundaries that protect carers’ wellbeing without guilt

One resource Claire highlighted was the Hub of Hope, because carers need access to support that doesn’t require jumping through endless hoops. These matter not because they fix everything, but because they return a small amount of control to people who’ve lost a lot of it.

What I Shared in my session

In my session, I spoke from lived experience about the long-term impact of caring, shaped deeply by my role as a carer for my mother. I shared how caring is rarely defined by single moments of crisis, but by the gradual, cumulative pressure that builds over time. This includes the emotional labour, the constant vigilance, and the way stress and trauma often go unrecognised because caring simply becomes “what you do.”

I reflected on how caring for my mother affected my mental health, identity, and sense of self. This experience led me to speak about carers’ rights the right to be recognised as a carer, to be involved in decisions, to access support, and to protect one’s own wellbeing without guilt or fear of judgement.

Most importantly, I focused on what actually helps:

  • Being identified and recognised as a carer, both formally and emotionally
  • Understanding and exercising carers’ rights
  • Access to peer support grounded in shared lived experience, not only professional services
  • Practical tools that reduce isolation and complexity

The Power of Being in the Same Room

One of the most powerful moments wasn’t during my talk it was during the conversations that followed. Carers sharing strategies with each other. Nodding in recognition. Saying, “I thought it was just me.”

That’s the quiet power of events like this. They remind carers that their experiences are valid, shared, and worthy of space.

A Collective Effort

It was a privilege to share the day with:

  • Claire Shelton, who spoke with clarity and compassion about resilience, stress management, and boundaries
  • Klivert Jabea, who brought warmth, insight, and a strong message that self-care is not a luxury
  • The organisers at Carers’ Mind CIC, who created an environment that felt safe, inclusive, and genuinely carer-focused

This conference was about acknowledging reality and that’s where real wellbeing work begins.

Leaving with Hope and Responsibility

I left the Abbey Centre reminded of why this work matters. Carers are holding together families, communities, and systems often at great personal cost. Supporting carers isn’t optional. It’s essential.

Resources and Support for Carers

If you are a carer and are looking for support for your wellbeing, mental health, or caring role, the following resources were highlighted or reflected in discussions during the conference:

  • Hub of Hopehttps://hubofhope.co.uk
    A free, UK-wide mental health support database that helps carers find local and national services quickly, without needing to navigate complex systems. It is particularly useful for carers who may not know where to start or who feel overwhelmed by traditional referral pathways.
  • CarersMind CIChttps://carersmind.co.uk/
    A community interest company focused on improving carers’ mental health and wellbeing through events, training, and open conversations that centre lived experience. Their work creates spaces where carers feel recognised, heard, and supported.
  • Carers UKhttps://www.carersuk.org/
    Provides information on carers’ rights, benefits, assessments, and practical guidance for unpaid carers across the UK.
  • Mindhttps://www.mind.org.uk/information-support/helping-someone-else/carers-friends-family-coping-support/
    Offers mental health information, helplines, and local services, including support relevant to carers experiencing stress, anxiety, or burnout.
  • NHS Carers Support
    Local NHS and local authority carers services can offer carers’ assessments, signposting, and practical support. Availability varies by area, but carers have a right to request an assessment.
  • Rethink Mental Illness – Carers Hub — https://www.rethink.org/advice-and-information/carers-hub/
  • Information and guidance for carers supporting someone with mental illness, including rights and practical support.

Christine’s Journey: From Carer to Mum – A Story of Resilience and Hope

By Matthew McKenzie

We all know how challenging the life of a carer can be, especially when it involves the emotional and physical toll of supporting a loved one through difficult health challenges. Christine’s powerful story of navigating her loved one’s mental health and recovery through the fears of mental health system discharge.

In Christine’s latest podcast, “From Carer to Mum” she opens up about her personal journey, sharing the challenges and triumphs of transitioning from the role of a carer back to simply being a mum. Over the course of two years, Christine witnessed her loved one’s growth and recovery, which was made possible through the right care, support, and therapy.

Christine’s story focuses about overcoming struggles; plus about rediscovering joy and a new sense of normalcy.

Now, Christine has taken the next step in sharing her journey. She’s launched her own podcast, where she’ll continue to inspire others by sharing her experiences, reflections, and insights into caregiving, recovery, and the journey of moving forward.

Tune into Christine’s new podcast channel, where you’ll hear more about the highs and lows of caring for a loved one, as well as the emotional lessons learned along the way. The first episode, titled “Christine’s Journey: From Carer to Mum,” is already live on SoundCloud and is ready for you to listen.

Click on the link below to listen.

Listen now and join Christine on her inspiring journey.

Supporting Young People, Supporting You: Free Training and Local Support for Unpaid Carers in Ealing

Caring for a child or young person can be incredibly rewarding – but it can also feel overwhelming, especially when you’re worried about their emotional wellbeing or safety. If you’re an unpaid carer in Ealing supporting a young person, you’re not alone, and there is local support available for you.

This spring, a new free online training opportunity is available for parents and unpaid carers in Ealing, designed to build confidence, understanding and hope when supporting young people who may be struggling.

Free Online Training: SPOT – Parents and Carers

PAPYRUS, the national charity for the prevention of young suicide, has been funded by Ealing Council to deliver SPOT: Parents and Carers – Connecting with Life and Creating Hope.

This training is specifically designed to support parents and unpaid carers to feel more confident in helping young people stay safe.

The sessions focus on:

  • Recognising signs that a child or young person may be struggling or experiencing suicidal thoughts
  • Developing confidence to talk openly and safely about suicide
  • Learning how to support safety planning alongside a young person
  • Understanding helpful language and common challenges in these conversations
  • Knowing where and how to access further support

The overall aim is to help carers feel better equipped to create safer spaces for young people and to strengthen connection, hope and understanding .

Online Training Dates

The SPOT sessions are delivered online, making them easier to attend around caring responsibilities. You can choose the date and time that works best for you:

  • 12 March 2026 – 7:00pm to 8:30pm
  • 18 March 2026 – 6:30pm to 8:00pm
  • 26 March 2026 – 1:00pm to 2:30pm

The sessions are free to attend, but booking is required.

You Don’t Have to Do This Alone: Ealing Carers Partnership

Alongside training opportunities like SPOT, unpaid carers in Ealing can access ongoing help through the Ealing Carers Partnership.

The partnership brings together local organisations to support unpaid carers of all ages, including parents and carers of children and young people. Support can include:

  • Information and advice
  • Emotional support and listening spaces
  • Help navigating services
  • Peer support and carer groups
  • Training and workshops to build skills and confidence

If you’re caring for someone without pay, whether that’s a child, young person, partner, friend or family member – you are recognised as an unpaid carer, and you are entitled to support.

The Ealing Carers Partnership works to make sure carers are seen, heard and supported across the borough, and can help you find the right service at the right time.

https://www.ealingcarerspartnership.org/

Building Confidence, Together

Many carers tell us that one of the hardest parts of supporting a young person is not knowing what to say, or worrying about saying the “wrong” thing. Training like SPOT is not about having all the answers, it’s about building confidence, understanding and connection.

If you are supporting a young person in Ealing and would like to strengthen your confidence, we strongly encourage you to take up this opportunity and to connect with the wider support available through the Ealing Carers Partnership.

If you have questions, need help accessing support, or would like to know more about what’s available for unpaid carers locally, please reach out on the link below

https://www.ealingcarerspartnership.org/

Coffee & Connection: A Space Just for Cancer Caregivers

Caring for someone affected by cancer can be deeply meaningful—and incredibly demanding. Between appointments, medications, emotional support, and everyday life, caregivers often put their own needs last. Yet caregivers need care too.

That’s why Coffee & Connection exists: a welcoming, gentle space where caregivers can pause, breathe, and connect with others who truly understand.

You Don’t Have to Carry It Alone

As a cancer caregiver, you may find yourself holding many emotions at once, these being love, worry, exhaustion, hope, frustration, and resilience. While friends and family may care deeply, it can be hard to explain the realities of caregiving to someone who hasn’t lived it.

Coffee & Connection brings together people who get it.

This is a place to:

  • Share how cancer has impacted your life as a caregiver
  • Listen to others’ stories without judgment or pressure
  • Feel seen, heard, and supported
  • Simply enjoy a cup of coffee in good company

There’s no expectation to talk if you don’t want to. Sometimes, just being in the room with others who understand is enough.

A Warm, Caring Environment

Set in a relaxed café-style space, Coffee & Connection is designed to feel calm and human and not clinical. Where Conversations unfold naturally over tea and coffee, surrounded by warmth, greenery, and kindness.

Whether you are caring for a partner, parent, child, sibling, or friend at any stage of the cancer journey, you are welcome to attend.

When and Where

Every first and last Tuesday of the month
10:00 AM – 12:00 PM

Clapham Park, Cube
116 Kings Avenue
London, SW4 8EP

Want to Know More?

If you’d like more information or want to check in before attending, you can reach out to:

A Small Step That Can Make a Difference

Caregiving can feel isolating, but connection has the power to lighten the load. Coffee & Connection offers a gentle reminder that you are not alone, and that your experiences matter too.

If you’re a cancer caregiver looking for understanding, support, or simply a moment of calm, consider joining us. The coffee will be warm, and so will the welcome.

Latest poem from my book – Unpaid, Unseen and Yet Unbroken

By Matthew McKenzie, facilitator of National ethnic mental health carers forum

Welcome to my first blog for 2026.

I am working on a new poetry project linked to my forum and poetry groups. This poem turned into song is written from the perspective of an unpaid ethnic mental health carer, and explores identity, pride, self-worth, and refusing shame in systems that don’t always listen or recognise lived experience.

The poem is taken from my forthcoming poetry book in development,
Unpaid, Unseen and Yet Unbroken (due 2026), which centres the voices of ethnic mental health carers and aligns closely with the aims of PCREF (Patient and Carer Race Equality Framework), particularly around listening, inclusion, and lived experience shaping systems.

I’m using poetry and creative formats as another way to:

  • amplify carer voices
  • explore race and care with honesty
  • support conversations about equity, culture, and confidence in mental health services

If this resonates with your work, community, or organisation, please feel free to share.
Listening is an act of care.

Poetry Submissions for Minority Carers in Mental Health Care: Share Your Voice

Matthew McKenzie FRSA BEM, poet and advocate for unpaid ethnic mental health carers, is inviting carers involved in NHS Trusts, PCREF (Patient and Carer Race Equality Framework), and Trust involvement registers to submit their poems for an upcoming 2026 poetry collection. This collection will spotlight minority carers’ voices and explore themes of race, culture, and lived experience in mental health care.

About the Poetry Collection

The collection will focus on amplifying minority carers’ experiences through poetry. It will be part of the paperback version of Matthew’s upcoming poetry book Unpaid, Unseen and Yet Unbroken and will include poems from carers all over the country. This is a unique opportunity for minority ethnic carers to have their voices heard and their stories shared on a national platform, contributing to the ongoing conversation about race equality, care, and mental health.

Why Should You Submit a Poem?

If you’re a minority carer or carers from underrepresented community, your voice matters. PCREF is committed to creating systemic change, and this collection will work alongside it to ensure that carers from minority communities are not left unheard. Submitting your poem gives you the chance to:

  • Raise awareness of the emotional, cultural, and psychological realities of being a carer.
  • Inspire others by sharing your lived experience.
  • Amplify minority voices within NHS Trusts, PCREF spaces, and mental health care systems.

Who Can Submit?

We welcome submissions from unpaid ethnic mental health carers who are:

  • Involved in NHS Trusts, PCREF, or trust involvement registers.
  • Attending ethnic mental health carer peer groups at carer centres
  • Interested in sharing their personal experiences and reflections through poetry.

How to Submit Your Poem:

  • Submit an original poem that reflects the emotional, cultural, and psychological realities of being an unpaid mental health carer.
  • Poems can focus on themes such as:
    • Emotional challenges of care
    • The hidden burden of caring
    • Resilience and survival
    • Navigating mental health services
    • Coping with racial and cultural barriers in care
    • Family dynamics in caregiving
  • Deadline for submissions is late April 2026.

Submission Guidelines:

  1. Format: Poems can be submitted in Word, PDF, or plain text format.
  2. Length: There is no strict length, but we recommend that submissions be no longer than 1 page.
  3. Multiple submissions: You can submit more than one poem if desired.
  4. Contact Information: Please include your full name, contact details along with your poem, so i can credit you. Unless you wish to be anonymous.

How to Submit:

You can also reach out to Matthew directly if you have any questions about the submission process or the collection.

What Happens After You Submit?

Once submissions are received, I will review all entries and select poems that align with the themes of the collection. All selected poets will be notified and credited in the final publication.

Need Inspiration or Support?

If you’re unsure where to start or need some encouragement, consider reflecting on your personal journey as a carer. Think about moments where language failed to express your experience or times when your strength surprised you. Your story is valuable, and this collection is about lifting up voices that have often been overlooked.


Contact Information:

For any questions or additional information, please contact Matthew McKenzie:


Submit Your Poem and Be Part of the Change

This is your chance to raise awareness and inspire others by sharing your lived experiences through poetry. Help shape a future where minority carers are valued, heard, and recognized for the essential work they do. We look forward to reading your stories!