Today I had the privilege of speaking at Carers Connect Southwark, part of the engagement programme shaping the new Southwark Adult Social Care Carers Strategy 2026. The room was filled with unpaid carers people supporting loved ones, friends and family members every single day, often quietly, often invisibly, and too often without recognition.
I was invited to encourage carers to use their voice. Because this strategy refresh isn’t just a document it is the unpaid carers strategy for Southwark. And if carers do not shape it, it will not truly reflect their lives.
Why This Event Matters
Southwark Council is developing a new carers strategy that will set out the vision for universal and statutory support in the borough for people caring for loved ones and friends .
The engagement process – supported by the Institute of Public Care (IPC) – is designed to:
Understand carers’ real experiences
Identify gaps in services and resources
Raise awareness of existing support
Encourage people to identify themselves as carers and seek help
This isn’t consultation for consultation’s sake. This is about influence.
Speaking From Experience
As someone who has cared and continues to work alongside carers through my mental health carers group for Southwark, Lambeth & Lewisham, I know first-hand how isolating caring can be. Many carers don’t even identify as carers they see themselves as “just a mum”, “just a son”, “just a partner”.
But caring changes your life. It affects:
Your physical and mental health
Your employment and finances
Your relationships
Your identity
When I spoke today, my message was simple: Your experience is expertise.
Professionals bring policy knowledge. Councils bring structure and statutory responsibility. But carers bring lived reality.
Without that reality, strategies risk becoming well-meaning but disconnected from daily life.
The Power of Co-Production
Co-production means designing services with people, not for them.
In the focus groups, carers were asked about:
What support works well
What doesn’t
What matters most
What priorities should shape the future strategy
That is very powerful.
When carers speak honestly about navigating assessments, accessing respite, struggling with mental health, or juggling work and care, they are not complaining – they are building a better system.
True co-production shifts the balance:
From passive recipients to active partners
From assumption to lived evidence
From policy written about carers to policy written with carers
Why Feedback Is Not Optional, It Is Essential
Too often carers are exhausted. After a long day of caring, attending a focus group can feel like another task. I acknowledged that today.
But I also said this: If carers do not feed back, decisions will still be made.
The difference is whether those decisions are informed by reality or by assumption.
The Southwark carers strategy will influence:
Funding priorities
Service design
Eligibility awareness
Communication approaches
Long-term vision for carer support
That makes these conversations crucial.
A Call to Carers
If you are an unpaid carer in Southwark and you see opportunities like this – attend. Speak. Share.
Your feedback:
Shapes policy
Influences services
Challenges blind spots
Creates accountability
Most importantly, it ensures that future support reflects real lives, not theoretical ones.
Final Reflections
Leaving the event, I felt hopeful.
Hopeful because carers showed up. Hopeful because they spoke honestly. Hopeful because the strategy refresh process appears to be genuinely seeking lived experience.
When someone you care about experiences a mental health crisis, the system needs to work quickly, safely and compassionately. But for many families and carers, the reality can involve delays, uncertainty, and distress especially when assessments or admissions happen under the Mental Health Act.
Now, there is a meaningful opportunity for carers to use their lived experience to shape research that aims to improve this care.
The importance of the Research
In times of crisis, timely support can prevent someone from becoming more unwell or needing more restrictive interventions later. Researchers at King’s College London want to better understand:
Experiences of delays in Mental Health Act assessments
What happens during admissions to hospital
How care pathways could be made safer and more responsive
Crucially, they want carers and service users at the heart of this work.
A Paid Opportunity to Share Your Expertise
Family members and carers of young people or adults who have received care under the Mental Health Act are warmly invited to join a Lived Experience Advisory Board.
As a carer, your insight is invaluable. You will help:
Shape the direction of the research
Share your views on how care could be improved
Ensure the work reflects real-life experiences
Meetings will take place both online and in person (London), making it accessible to a wide range of participants.
Participants will receive £27.50 per hour (plus expenses) in recognition of their time and expertise.
Who Can Get Involved?
The research team would like to hear from:
Adults aged 18+ with experience of detention under the Mental Health Act
Family members and carers of young people or adults with experience of care under the Mental Health Act
If you have supported someone through assessment, admission, or crisis care, your perspective could directly influence how future services are designed and delivered.
Be Part of Making Care Safer
This work is funded by the Better Health & Care Hub at King’s College London and is focused on improving safety and outcomes for people in crisis.
Your lived experience can help ensure future families face fewer delays, clearer communication, and safer care pathways.
To get involved or find out more, visit: tinyurl.com/MHAcarepathways
Eating Disorders Awareness Week 2026 has begun, and this year’s theme is Community a reminder that no one should face an eating disorder alone.
Eating disorders are serious mental health conditions that affect people of all ages, genders, ethnicities and body sizes. They include anorexia, bulimia, binge eating disorder (BED) and other specified feeding and eating disorders. Despite how common they are, stigma and misunderstanding still prevent many people from seeking help early.
Community plays a vital role in changing that.
In recognition of Eating Disorders Awareness Week 2026, I have shared a video raising awareness about:
You can watch the full awareness video here:
Recovery is not something most people achieve in isolation. It happens through connection through families, friends, carers, clinicians, workplaces, schools and peer networks coming together to provide support, understanding and hope.
Supporting someone with an eating disorder can be emotionally exhausting and overwhelming. Unpaid carers, parents, partners and loved ones often carry an invisible weight. This week is also about recognising their role and ensuring they, too, have access to support and community.
If you or someone you know is struggling, please remember: help is available, and recovery is possible.
This Eating Disorders Awareness Week, let’s strengthen our communities, challenge stigma, and ensure no one struggles alone.
Beat Eating Disorders UK’s leading eating disorder charity. Helpline, youthline, online support groups and carer support. 📞 Helpline: 0808 801 0677 🌐 https://www.beateatingdisorders.org.uk
BAATN (Black, African & Asian Therapy Network) Directory of qualified therapists of Black, African, Asian and Caribbean heritage. 🌐 https://www.baatn.org.uk
Muslim Youth Helpline Faith-sensitive support for young Muslims. 📞 0808 808 2008 🌐 https://www.myh.org.uk
Switchboard LGBT+ Helpline Support for LGBTQ+ individuals. 📞 0300 330 0630 🌐 https://switchboard.lgbt
The Patient and Carer Race Equality Framework (PCREF) is a landmark policy designed to improve racial equity in NHS mental health care. But if it’s going to deliver meaningful change, one key voice must be placed at its centre: the carer.
Watch the video
Putting the “C” (Carer) into PCREF
In this vlog, I explore why unpaid ethnic minority carers — who are often the backbone of support for people with mental health needs — are still too often excluded from decision-making, planning, and implementation in services designed to support both them and their loved ones
A Shared Movement
Integrating PCREF and Triangle of Care is a commitment to transforming relationships in mental health care.
Carers are not just an add-on. They are central to safe, equitable, and culturally competent services.
Watch the video above, share your thoughts, and join the conversation.
Race Equality Week 2026 and Black History Month 2026 (US) is at a time when conversations about inclusion feel more important and more urgent than ever.
I have created a short video to explore why this week matters, what this year’s theme #ChangeNeedsAllOfUs represents, and how each of us can play a role in building fairer workplaces and communities. Rather than focusing on awareness alone, the aim is to encourage honest reflection and meaningful action that lasts beyond a single week.
Recent events have reminded us why race equality cannot be taken for granted. Incidents circulating online including a widely criticised video that portrayed the Obamas using racist imagery highlight how harmful stereotypes and dehumanising narratives still appear in public discourse. Moments like this reinforce why challenging racism, promoting respectful representation, and standing up for equality remain essential.
Race equality is not about blame or division. It’s about recognising lived experiences, understanding that fairness is not the same as sameness, and ensuring everyone feels valued, respected, and safe.
Real change doesn’t happen because of one campaign or one voice. It happens when many people take small, consistent steps listening more closely, questioning assumptions, and choosing inclusion in everyday decisions.
Because progress must be driven by all of us doing something, not just the few.
Every year on 4 February, World Cancer Day brings people together to raise awareness, inspire action, and support everyone affected by cancer. This year’s theme, United By Unique, reminds us that every cancer experience is different yet no one should face it alone.
Behind many cancer journeys are unpaid caregivers. They are partners, friends, parents and family members who provide emotional support, organise appointments, manage daily routines, and help loved ones navigate some of life’s most difficult moments. Their contribution is invaluable, but too often it goes unseen.
To mark World Cancer Day 2026, I have created a short video highlighting the vital role of unpaid cancer caregivers and the importance of fair, person-centred care across the UK. The video also reflects key messages from Macmillan Cancer Support, including the urgent need to address inequalities in cancer care and ensure that everyone receives the support they need, when they need it most.
Also for World Cancer day 2026comes alongside the newly released National Cancer Plan for England, which outlines ambitions to improve early diagnosis, treatment and personalised support so more people can live well with and beyond cancer. You can read more about the Plan here: https://www.gov.uk/government/publications/national-cancer-plan-for-england
At least every 75 seconds, someone in the UK is diagnosed with cancer. In that moment, lives change not only for the person diagnosed, but also for those who step into caregiving roles. By recognising caregivers and amplifying their voices, we can help build a more compassionate and supportive future for everyone affected by cancer.
This World Cancer Day, we invite you to take a moment to reflect, learn, and share. By raising awareness and working together, we can support unpaid caregivers, challenge inequalities in care, and help create a future where no one feels lost or alone.
brief update By Matthew McKenzie – Chair of the National ethnic mental health carer forum
The January 2026 Ethnic Carer Forum brought together carers, people with lived experience, NHS trusts, community leaders, and national partners to reflect honestly on racial inequalities in health and social care, and to explore how systems can move from good intentions to real change.
The forum continues to act as a safe and challenging space for ethnically diverse and marginalised carers, including Black, Asian, Traveller, LGBTQ+ and other communities, to share experiences, influence policy, and hold organisations to account .
Opening the session, Matthew McKenzie (mental health carer and forum founder) reflected on long-standing inequalities faced by minority carers. He highlighted:
Persistent mistrust of mental health systems, rooted in lived experience and historical harm
Patchy engagement by services, despite strong national rhetoric
Power imbalances that leave carers feeling unheard or excluded
The forum was originally created simply to connect marginalised carers with one another. Today, it also plays a vital role in scrutinising national frameworks, such as the Patient and Carer Race Equality Framework (PCREF), and ensuring carers’ voices shape implementation rather than being added as an afterthought.
Community Voice and National Influence
Race and Health Observatory
Bren, a community volunteer and member of the NHS Race and Health Observatory stakeholder engagement group, shared insights into national efforts to address racial health inequalities.
The NHS Race and Health Observatory: Purpose and Limits
Turning to his national role, Bren explained that the NHS Race and Health Observatory was established in 2021 and funded by the NHS until at least 2027. Its purpose is to:
Examine racial inequalities affecting both communities and the NHS workforce
Operate independently, rather than as an internal NHS programme
Focus on solutions, not just reports and data
He outlined several key areas of current work:
Small Grants Pilot – supporting community-led initiatives, while acknowledging that funding levels are modest and only a starting point
Community Participation and Co-production Resource – aimed at helping organisations engage communities more meaningfully and consistently
Action Resource Platform – an emerging online space intended to bring together data, case studies, and learning in one place
However, Bren was clear that these initiatives are still evolving and must be continuously shaped by lived experience, not institutional convenience.
A Critical Question: Where Are Carers?
One of the most important moments in Bren’s update came when he openly questioned whether carers’ voices are adequately represented within national stakeholder structures including the Observatory itself.
He noted that while there is growing representation from professionals, young people, and community organisations, carers can easily be overlooked unless explicitly prioritised. Bren committed to:
Reviewing current stakeholder representation
Raising the absence of carer voices within the Observatory
Feeding back to the forum on what action is taken
This moment strongly aligned with the forum’s wider purpose: holding national bodies to account while remaining constructively engaged.
Listening as an Act of Power-Sharing
Throughout his update, Bren returned repeatedly to the theme of listening not as a soft skill, but as a deliberate act of power-sharing. He challenged NHS leaders and organisations to move beyond engagement that is performative or extractive.
He stressed that real accountability means:
Showing communities what has changed as a result of their input
Being honest when progress is slow or blocked
Measuring impact through people’s lived experience, not just organisational metrics
As Bren put it, communities do not just want to be consulted they want to see evidence that their voices matter.
Local NHS Action: Gloucestershire Health and Care NHS Foundation Trust
Gloucestershire Health and Care NHS Foundation Trust: Refreshing PCREF with Honesty and Challenge
The update from Gloucestershire Health and Care NHS Foundation Trust offered a candid and important snapshot of what it looks like when an NHS trust acknowledges where progress has stalled and begins the difficult work of rebuilding momentum around race equality and co-production.
Delivered by Ruth, who joined the Trust’s Quality Assurance Directorate in late 2024, the presentation focused on the reinvigoration of the Patient and Carer Race Equality Framework (PCREF) after a period where activity had slowed due to leadership changes and competing pressures.
A central part of the Trust’s renewed PCREF work was a recent Gloucestershire engagement event, which brought together NHS leaders, community members, carers, and national partners to openly explore race inequality, power, and accountability in mental health services.
The event included a powerful contribution from Matthew McKenzie, who presented on how carers should be important to PCREF and the long-term impact this has on trust between services and communities. His contribution was not framed as abstract theory, but rooted in lived experience as a mental health carer and long-standing advocate.
PCREF Matters in Gloucestershire
Ruth began by grounding the discussion in national and local evidence. Despite higher prevalence of mental health need, people from Black and ethnically diverse backgrounds continue to experience:
Lower access to mental health treatment
Poorer recovery rates from talking therapies
Higher likelihood of restrictive practices, including restraint
Greater mistrust of services, particularly among families and carers
In Gloucestershire, these national patterns sit alongside a population that is predominantly white, which can make racial inequalities easier to overlook or minimise. Ruth was clear that small numbers do not reduce responsibility in fact, they increase the risk that minority experiences become invisible in data and decision-making..
Data: Necessary but Not Sufficient
Data featured heavily in the update and in the discussion that followed. The Trust is working to improve:
Ethnicity recording, including challenging the routine use of “not known”
Disaggregation of data on restrictive practices
Understanding access, experience, and outcomes across services
However, Ruth was clear that data alone does not tell the full story. She spoke about the need to “scratch beneath the surface” and combine quantitative data with lived experience, narrative, and community insight, particularly where numbers are small but impact is significant.
Universal Care Plan (London)
Universal Care Plan (UCP): Promise, Possibility and Carer Challenge
Hayley Blanchard introduced the Universal Care Plan (UCP), currently being rolled out across London as a shared digital record enabling people to document what matters most to them in health and care.
The session on the Universal Care Plan (UCP) was one of the most interactive, challenging, and emotionally charged discussions of the Ethnic Carer Forum. While the tool was presented as a positive step towards personalised and joined-up care, carers and community representatives were clear that digital innovation must not repeat old inequalities in a new format.
The update was delivered by Hayley, a community nurse by background and consultant supporting the UCP programme in London. Her presentation outlined the intention behind the tool but it was the questions from carers that shaped the real substance of the discussion.
What Is the Universal Care Plan?
The Universal Care Plan is a shared digital record, currently available across London, designed to bring together key information about a person’s health, care, and what matters to them all in one place.
Reduce the need for people to repeat their story to multiple professionals
Capture personal, cultural, and practical information alongside clinical needs
Support more joined-up decision-making across services
Improve coordination in urgent situations (e.g. ambulance or hospital admission)
It is intended for people of all ages and conditions, including those with mental health needs, long-term conditions, and caring responsibilities.
Why the UCP Was Brought to the Forum
Hayley explained that the UCP team is running targeted engagement with ethnically diverse communities, recognising that digital tools often fail those who already experience exclusion, mistrust, or barriers to access.
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Scrutinise the UCP from a carer and lived-experience perspective
Identify cultural, ethical, and safeguarding concerns early
Influence how the tool develops, rather than responding once it is fully embedded
This framing was welcomed but it did not shield the UCP from robust challenging questions shown below.
1. “Who was this tool designed for clinicians or communities?”
Several carers questioned whether the UCP had been designed primarily from a medical lens, rather than co-produced with people who use services and those who care for them.
2. “Where is co-production and when does it actually start?”
Carers asked whether engagement was happening after development, rather than alongside it.
Key concerns included:
Whether carers and service users had shaped the structure, language, and assumptions of the UCP
Whether feedback would lead to real changes, or simply be “noted”
How communities would know what had changed as a result of their input
3. “What about people who don’t have insight?”
One of the most important safeguarding questions came from carers supporting people with serious mental illness or fluctuating capacity.
Carers asked:
What happens if someone records decisions that do not reflect their best interests during periods of poor insight?
How are carers expected to raise concerns if they cannot view or edit the care plan?
What safeguards exist to prevent harm when information is inaccurate or incomplete?
5. “Who sees this information and where does it go?”
Trust and data sharing were major concerns, particularly for communities with a history of surveillance, discrimination, or misuse of information.
Carers asked directly:
Which professionals can access the UCP?
Can information be shared beyond the NHS?
How is consent managed and reviewed over time?
For some participants, uncertainty around data use undermined confidence in the tool, even if its intentions were positive.
West London NHS Trust: PCREF in Practice
The update from West London NHS Trust offered one of the most honest and grounded reflections of the day on what it actually takes to implement the Patient and Carer Race Equality Framework (PCREF) in a large, complex mental health organisation.
Presented jointly by Linda and pcref carer lead, the update stood out because it did not present PCREF as a finished product. Instead, it described PCREF as ongoing, difficult work, shaped by challenge, learning, and persistence — particularly from carers and people with lived experience.
Building PCREF With Carers and Lived Experience From the Start
Linda explained that West London’s PCREF journey began before her arrival at the Trust, with an intentional decision to embed carers and people with lived experience at leadership level, not just in consultation roles.
From the outset, the Trust established:
A PCREF steering group with a dedicated carer lead (Debbie)
A lived experience lead, ensuring parity of voice
A commitment to co-produce priorities, not simply validate pre-written plans
This early structural choice shaped everything that followed — particularly the Trust’s willingness to sit with discomfort and challenge.
Listening to Learn: Turning Experience Into Action
Throughout 2024, the Trust undertook extensive “listening to learn” work across services. These sessions gathered feedback from carers, patients, and communities about their experiences of mental health care, racism, and exclusion.
Rather than treating this feedback as anecdotal, West London used it to co-produce:
A PCREF action plan
Identified priorities for change
A shared understanding of where harm was occurring — not just where policy said it shouldn’t
This process also highlighted how often data already existed, but had not been meaningfully used or shared.
Data: Knowing the Problem Is Not the Same as Acting on It
West London were open about one of the Trust’s biggest challenges: data transparency and usability.
They acknowledged that:
The Trust knows Black, African Caribbean and South Asian communities have poorer outcomes and higher drop-out rates, particularly in talking therapies
Despite this, creating a clear, accessible PCREF dashboard has been slow and frustrating
Without visible data, communities cannot effectively hold the Trust to account
This honesty resonated strongly with carers, many of whom noted that “knowing the data exists” is not the same as being able to see or use it.
Racial Trauma: Naming the History Behind Mistrust
One of the most powerful elements of the West London update came from the PCREF carer lead account of the racial trauma workshops, which she co-designed and delivered with Linda and colleagues.
These sessions did not begin with policy or frameworks. Instead, they began with history acknowledging the deep roots of mistrust in health systems.
Debbie described how the workshops explored:
The legacy of slavery and colonial medicine
Unethical medical experiments on Black and South Asian communities
How generational trauma shapes present-day interactions with services
Examples such as the Tuskegee experiments and other lesser-known abuses were used not to shock, but to contextualise fear, resistance, and disengagement often labelled as “non-compliance”.
Planning Meaningful Speaker Engagement for 2026
Matthew McKenzie on Shaping the Ethnic Carer Forum Programme
As part of planning for the Ethnic Carer Forum in 2026, Matthew McKenzie presented a structured proposal focused on how speakers and themes should be selected, and why this matters for ethnic minority carers
Matthew explained that the forum’s strength lies in its ability to bring together carers, lived experience voices, community organisations, and systems leaders in a way that feels meaningful rather than tokenistic.
Key Themes Proposed for 2026
Matthew’s presentation outlined 15 proposed themes for the year to invite speakers to the forum for engagement, each linked to clear reasons why they matter to ethnic minority carers. These include:
Racism and mental health beyond surface-level conversations
PCREF in practice, focusing on what has actually changed for carers
Regulation, inspection, and accountability, including complaints processes
Police involvement, crisis response, and Section 136
Black mental health and carer experience
South Asian, Muslim and faith-context carers
Older adults and intergenerational trauma
Children, young people, and parent carers
Carers, poverty, and the benefits system
Immigration status, NRPF, and mental health
Co-production: when it works and when it doesn’t
Workforce racism and its impact on carers
Alternatives to crisis and coercive care
Complaints, justice, and redress
Examples of “what good looks like” — models that have delivered real change
As one participant reflected: “If people can’t see the change, they won’t believe it’s happening
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.
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.
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
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 – 1pmand2pm – 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:
Scan the QR code on the flyer shown above my blog to register your interest
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.
A Caring Mind 