Lewisham, Southwark & Lambeth carer forum update August 2025

The meeting facilitated by Matthew McKenzie began with introductions from participants and updates on various carer support initiatives, including forum mergers and NHS plan changes.

Local council strategies and initiatives were discussed across different boroughs, with particular focus on Lambeth and Southwark’s carer support plans and the development of a carer’s forum in Lewisham. The group explored challenges faced by carers, including access to primary care and the need for better coordination, while discussing recent conferences and upcoming events aimed at supporting and advocating for carers’ rights.

Lewisham Carers Strategy and Service Updates

Lewisham is currently refreshing its Carers Strategy to strengthen support for unpaid carers and improve access to local services. The focus is on ensuring carers are included in decision-making through co-production and collaboration with the council, health providers, and community organisations. A major priority is improving well-being services, providing better information, and ensuring carers know their rights under the Carers Leave Act.

As part of wider NHS reforms, Lewisham is moving towards a neighbourhood-based care model designed to bring services closer to local communities. While this aims to make access more seamless, carers raised concerns about inconsistent GP access, gaps in communication, and challenges navigating between boroughs when supporting loved ones. The forum highlighted the importance of better coordination between primary care, hospital discharge planning, and mental health services to ensure carers are recognised and supported.

Lambeth Carers Strategy Refresh

Lambeth is currently refreshing its Carers Strategy with the aim of improving services, increasing visibility, and ensuring carers have a stronger voice in decision-making. The updated strategy focuses on key priorities such as well-being, access to assessments, respite options, and workforce training for those supporting unpaid carers.

There was a particular focus on improving support for mental health carers in Lambeth. The Carers Hub Lambeth team continues to facilitate peer support groups and collaborates closely with the South London and Maudsley NHS Foundation Trust to ensure carers are recognised as partners in care planning. Initiatives like Triangle of Care are gaining momentum, emphasising better communication between professionals and families while creating pathways for carers to get involved in shaping local mental health services.

Carers Hub Lambeth also celebrated the growing range of community-based activities available for carers and families in Lambeth. Over the summer, there have been several events designed to support young carers, including trips, tours, and group workshops aimed at helping them connect with others and access emotional support. These initiatives are part of Lambeth’s broader goal to make sure younger carers, who are often overlooked, receive the help they need both at home and within education.

One of the key upcoming events for Lambeth carers is the Lambeth Carers Strategy Event taking place on 25th September 2025 at 336 Brixton Road. The session will bring together carers, professionals, and decision-makers to review plans, share ideas, and set priorities for the future. Carers are strongly encouraged to attend to ensure their voices are heard and to take part in shaping the borough’s action plans moving forward.

Southwark Council Carers Support and Strategy Group

Matthew fed back on how Southwark Council continues to strengthen its approach to supporting unpaid carers, with a growing emphasis on improving access to information, assessments, and respite services.

The Unpaid Carers Strategy Refresh is a project running from August 2025 to April 2026, led by Southwark Council in collaboration with Adult Social Care, the NHS, local voluntary groups, and unpaid carers themselves. The plan focuses on improving support for carers by updating evidence on local needs, strengthening engagement with seldom-heard groups, and mapping gaps in current services.

Key priorities include better access to respite care, enhanced referral pathways, stronger partnerships with health services, and improved inclusion of young carers, carers with disabilities, and LGBTQ+ carers. The initial phase, from August to October, involves reviewing existing strategies, mapping current services, gathering insights through focus groups and surveys, and benchmarking against national policies and neighbouring boroughs.

The forum highlighted the importance of co-production, ensuring that carers are actively involved in shaping local strategies and service priorities.

Update on Key Themes from the final NHS England Carers Conference

Matthew highlighted that the 2025 NHS England carers conference placed a strong emphasis on recognising unpaid carers as essential partners in delivering effective healthcare. The NHS stressed its commitment to involving carers in shaping services and policies, ensuring their voices are reflected at every stage of decision-making. There was a clear acknowledgement that without unpaid carers, many health and social care systems would face significant pressure.

You can watch the conference below.

A major focus was on the NHS’s shift towards neighbourhood-based care models designed to bring services closer to communities. Matthew explained that this change aims to improve coordination between GPs, hospitals, and mental health services, but he also highlighted concerns raised about fragmented communication and the risk of carers being left out of local planning. Carers at the conference called for better access to information and more joined-up pathways across boroughs.

The conference also featured interactive workshops and discussion groups focused on co-production, digital innovations, and addressing inequalities among carers. Specific sessions explored improving support for young carers, carers from minority backgrounds, and those supporting loved ones with mental health needs. The event closed with a call to action for stronger collaboration between carers, NHS teams, local authorities, and community organisations. Attendees were encouraged to get involved in upcoming forums and engagement opportunities to help shape future services and ensure carers’ voices are at the heart of decision-making.

Matthew shared updates on national policy developments discussed at the conference, including the Carers Leave Act and commitments to expanding access to respite, assessments, and flexible working rights. There was also a discussion about new digital tools and support platforms designed to make it easier for carers to connect with professionals and access resources. However, many attendees expressed concerns that these initiatives need proper funding and training to work effectively in practice.

Why Unpaid Carers need to be aware of learning Digital Skills

By Matthew McKenzie

The Urgent Need for Digital Skills Among Unpaid Carers

Unpaid carers who provide support to family members, friends, or neighbors with long-term health conditions are the backbone of many communities. Their work is often invisible, yet it is essential for the well-being of countless individuals. As healthcare systems rapidly digitize, the landscape of caregiving is undergoing a profound transformation. Unpaid carers now face the challenge of adapting to new technologies, digital platforms, and online resources that are becoming integral to the delivery of care.

This blog explores why technical and digital skills are no longer just optional for unpaid carers. The blog is also a transcript of matthew’s video below.

Drawing on insights from matthew’s experience as an unpaid carer & IT professional and advocate for carers, we delve into the practical reasons behind this shift, the opportunities and challenges it presents, and the future trends that will shape caregiving in the years to come.

The Changing Face of Caregiving

Digitization in Healthcare

Healthcare is moving online at an unprecedented pace. Electronic health records, telehealth platforms, wearable health devices, and digital prescriptions are becoming the norm. The reasons are clear: digitization streamlines processes, reduces costs, and enables real-time access to critical health data. For unpaid carers, this means that many aspects of their role now require interaction with digital tools.

The Role of Carer Centers

Local carer centers have traditionally been the first point of contact for those seeking support. As these centers will play a crucial role in helping carers acquire the skills needed to navigate the new landscape. Online training, virtual support groups, and digital resource libraries are just some of the ways carer centers are evolving.

Overcoming Barriers to Digital Inclusion

Challenges Faced by Carers

Not all carers are comfortable with digital environments. Some may lack the means to access technology, while others face disabilities that make using digital platforms difficult. For example, visual impairments can pose significant challenges. It’s important for carer centers and support organizations to recognize these barriers and provide alternative solutions where possible.

The NHS 10-Year Plan

Digitization is at the heart of the NHS’s long-term strategy. Unfortunately, unpaid Carers who fail to meet the demand for digital skills may find themselves excluded from essential services and support. Embracing technology is not just about keeping up, it’s about empowering carers to meet the needs of those they support with confidence and efficiency.

Conclusion

The digitization of healthcare is transforming the role of unpaid carers. Technical and digital skills are now essential for accessing resources, coordinating care, and advocating for loved ones. While the transition may be challenging, it offers opportunities for greater efficiency, independence, and empowerment.

If you are an unpaid carer, now is the time to invest in your digital skills. Seek out training, connect with support networks, and take advantage of the tools available. Your role is vital, and with technology on your side, you can continue to make a difference in the lives of those you care for.

Celebrating Poetry, Caring and Community at the Southbank Centre

By Matthew McKenzie – Carers UK volunteer & Ambassador

As a poet and carer of lived experienced, I always try and listen to other poets when I get the chance.

So on Tuesday 19 August 2025, I had the pleasure of attending the Carers UK Poetry Competition 2025 Celebration at the National Poetry Library, located on Level 5 of the Royal Festival Hall at London’s Southbank Centre.

Carers UK staff were welcoming guests, carers and poets who contributed to the Carers UK Poetry anthology to the event.

The event, hosted by Carers UK and led by Michael Shann, Head of Carer Support, which marked a very special milestone: the organisation’s 60th anniversary. It was an evening of reflection, creativity, and celebration, bringing together carers, poets, supporters, and friends to honour the voices of those who care for others.

For the year 2025, the poetry competition was themed “Caring, Family and Community”, with more than 270 entries submitted from across the country. The anthology launched on the night, Caring, Family and Community, where beautiful collection of poems capturing the emotions, challenges, and deep humanity at the heart of caring.

The programme included readings of winning, highly commended, and shortlisted poems. The anthology also features a preface by Helen Walker, Chief Executive of Carers UK, and a foreword by Cheryl Moskowitz, Lead Competition Judge 2025.

The atmosphere at the National Poetry Library was warm and I was welcomed by many of the Carers UK team including Carers Scotland. Guests and poets enjoyed celebratory drinks and canapés while engaging in conversations about poetry, caring, and the power of creative expression.

The poetry book itself is thoughtfully arranged, beginning with featured poems before moving on to the winning, highly commended, and shortlisted entries, and ending with notes on the contributors. The poets performed their poems, each highlighting a different perspective on caring, family, and community, weaving together diverse voices into a powerful collective story.

One poem that particularly stood out to me was “Heart & Soul” by Alison Hull.

Heart and Soul
by Alison Hull

Even though it’s new to me,
I’m going to write a poem.
I don’t know what to write,
Or where it’s even going.
But what I’m very clear of,
Is you’ve taught me like no other.
You make me very proud,
To be your carer and your mother.
We laugh at times and cry so much,
And we’ve learnt a thing or two.
I’ve met your needs, calmed your fears,
Taken care of you.
Little by little we get things done,
Although it isn’t always easy.
We take small steps, sometimes none,
Resting up,
If needs be.
Your bravery inspires me,
Your love for animals too.
I try to understand,
how life really is for you.
The caring role’s a huge one,
It can be isolating too.
It helps to connect with others,
Who know what we’re going through.
So this is the end of my poem,
But not of my caring role.
That journey will continue,
With all of my heart and soul.

When Alison recited it that evening, I felt it was clear that she spoke from the heart. Her words captured the tenderness and strength of caring. I felt the poem was well crafted.

For me personally, as a Carers UK volunteer and poet, it was inspiring to see how words can bring people together and shine a light on the experiences of carers.

Being able to attend, listen, and celebrate alongside others who share a passion for both caring and poetry was a privilege, so I was very thankful to be invited.

The Southbank Centre, with its iconic Royal Festival Hall, provided the perfect backdrop a cultural hub alive with creativity and community spirit.

Events like this remind us not only of the importance of caring, but also of the importance of telling our stories. Poetry gives voice to what can sometimes be invisible, and Carers UK continues to ensure those voices are heard.

I’d like to thank Michael Shann and the Carers UK team for organising such a meaningful evening, and for their ongoing commitment to supporting carers across the UK.

If any carers would like a copy of the anthology, they can email membership@carersuk.org

Here’s the updated section with the official website link included:

Becoming a Member of Carers UK

If you are a carer yourself, one of the most valuable steps you can take is to become a member of Carers UK. Membership is free and open to anyone caring for a family member, friend, or neighbour. By joining, you’ll gain access to:

A supportive community of carers who truly understand what you’re going through.
Regular updates, newsletters, and information on carers’ rights and support.
Invitations to events, workshops, and opportunities to share your story.
Resources and guidance to help you manage the challenges of caring.

Carers UK is not just an organisation as it’s a lifeline for many. By becoming a member, you can feel more connected, supported, and empowered in your caring role.

You can sign up easily via the Carers UK website: www.carersuk.org

Support & Wellbeing Workshops for People Affected by Cancer – 2025

Added by Matthew McKenzie (Facilitator of National Cancer Carer Forum)

If you’re living with cancer, supporting someone who is, or adjusting after treatment, it can be incredibly valuable to connect with others who understand. This year, Barts Health NHS Trust and Macmillan Cancer Support are hosting free workshops to support your wellbeing and help you manage fears about cancer recurrence.

Cancer and Your Wellbeing Workshop – Newham University Hospital

📅 Dates:

Tuesday 22 July 2025 – 10:30 am to 1:30 pm
Tuesday 23 September 2025 – 10:30 am to 1:30 pm
Tuesday 2 December 2025 – 10:30 am to 1:30 pm

📍 Location: Zone 2, Ground Floor, Education Centre, Newham University Hospital, E13 8SL

ℹ Who can attend?
Open to anyone with a cancer diagnosis or experience living with cancer. Refreshments and light snacks are provided.

📞 Contact: 020 7363 8758
📧 Email: bartshealth.macmillannuh@nhs.net

Fears of Cancer Recurrence (FoCR) Workshops – Barts Health Cancer Psychological Services

These interactive sessions help you understand and manage worries about cancer coming back or spreading, and connect you with others facing similar concerns.

📅 Dates & Venues:

Tuesday 9 September 2025 – 9:30 am to 12 pm
Boardroom, Junction 6, Whipps Cross Hospital, E11 1NR
Book here
Wednesday 5 November 2025 – 10:00 am to 12:30 pm
Seminar Room 2, Education Centre, Newham Hospital, E13 8SL
Book here

Open to: Patients, relatives, and friends

📞 Call/Text: 020 3765 8807
📧 Email: cancerpsychologicals.bartshealth@nhs.net

These sessions are a great way to gain practical strategies, share experiences, and connect with others who understand the emotional side of living with and beyond cancer.

💡 Tip: If you can’t attend but want to know about future events, contact the teams above to join their mailing lists.

Understanding Care Guilt and Shame in Culturally Tight-Knit Communities

By Matthew McKenzie

Caring for someone with long-term mental illness is a profound act of love and responsibility, just as i cared for my mother, but it is also fraught with emotional complexities, especially within culturally tight-knit communities. The experience of unpaid carers, those who provide care without financial compensation, can be shaped by powerful cultural expectations, traditions, and social pressures. These factors often lead to hidden challenges such as guilt and shame, which can create barriers to seeking help and support.

This blog post which is a transcript of my video explores the intricate dynamics of care guilt and shame, drawing on my insights as facilitator of the National Ethnic Mental Health Care Forum.

While the focus often falls on ethnic minority carers, many of the themes discussed I feel are universal, affecting unpaid carers from all backgrounds. However By examining the cultural ideals, emotional burdens, and systemic challenges faced by carers, we can better understand how to support them and promote positive change in mental health care.

The Role of Culture in Shaping the Carer Experience

Family Duty and Community Honor

In many tight-knit communities, caring for a family member is seen as a moral duty and a source of honor. The expectation is clear: “We look after our own.” This deeply rooted tradition fosters strong family bonds and a sense of belonging. The carer’s role is often defined by values handed down through generations, reinforcing the idea that caring is not just a responsibility but an essential part of one’s identity.

However, these cultural ideals can also create significant challenges. The notion that the “perfect carer never complains or needs help” sets an unrealistic standard, making it difficult for carers to express their struggles or seek support. Weakness is discouraged, and the pressure to cope without showing strain is especially pronounced among men, who may feel compelled to “man up” and avoid displaying vulnerability.

Keeping Illness Within the Family

Another common theme is the tendency to keep issues of ill health, particularly mental illness, within the family or community. This approach is often seen as a way to protect the family’s reputation and maintain social cohesion. Religious and cultural beliefs may further reinforce the idea that problems should be addressed privately, sometimes through prayer or spiritual practices, rather than seeking external help.

While these traditions can provide comfort and a sense of solidarity, they can also lead to isolation and prevent carers from accessing the support they need. The fear of gossip, judgment, or being seen as failing in one’s duty can be overwhelming, especially when mental health is stigmatized or misunderstood within the community.

The Emotional Weight of Caring: Guilt and Shame

How Guilt Creeps In

Guilt is a pervasive emotion among carers, particularly when cultural norms dictate that they should be able to handle all challenges alone. The demands of caring often mean missing out on community events, family gatherings, or social obligations. Community leaders or members may notice these absences and interpret them as letting the community down, adding to the carer’s sense of guilt.

This guilt can manifest in several ways:

Resentment and Frustration: Carers may feel frustrated with themselves or the person they are caring for, leading to emotional strain and potential conflict.
Personal Guilt: The belief that needing a break or personal time is selfish can prevent carers from prioritizing their own well-being, even when burnout is imminent.
Fear of Judgment: In large families or communities, the expectation to manage alone can be overwhelming. Carers may worry about being judged or seen as failing in their role.

The Catch-22 of Self-Care

The need for personal time and self-care is undeniable, yet carers often feel trapped in a catch-22. Taking time for themselves is viewed as selfish, but neglecting their own needs can have detrimental effects on their mental and physical health. The pressure to uphold cultural ideals and avoid showing weakness makes it difficult to break this cycle.

In some communities, there may not even be a word for “carer”—it is simply assumed that family members will step in as needed. This lack of recognition further compounds the challenges, as carers struggle to articulate their needs or seek validation for their efforts.

The Impact of Shame and Stigma

Saving Face and Avoiding Help

Shame is closely linked to guilt, and both emotions can prevent carers from reaching out for help. The desire to “save face” is strong in many communities, where reputation and social standing are highly valued. Admitting to struggles or accepting support may be seen as a sign of weakness or failure, leading carers to reject offers of assistance from mental health services or outreach programs.

Internalized comments such as “this is your duty,” “you must put up a front,” or “we don’t put family in care” reinforce the belief that seeking help is unacceptable. The fear of gossip and misunderstanding is real, especially in communities where mental health is poorly understood or lacks a cultural vocabulary.

Religious and Cultural Barriers

Religious identity can also play a role in shaping attitudes toward mental health and caring. In some faith-based communities, there may be little space for open discussion about mental illness, and spiritual solutions may be favored over professional support. This can create additional barriers for carers, who may feel unsupported or misunderstood by both their community and the wider mental health system.

Systemic Challenges: Inequalities in Mental Health Care

The Patient Care Race Equality Framework (PCREF)

Recognizing the unique challenges faced by minority carers, NHS England has developed the Patient Care Race Equality Framework (PCREF). These set of policies aims to tackle inequalities in mental health care, particularly for ethnic minority groups. The framework emphasizes the importance of breaking down guilt and shame, promoting better outcomes for minority communities, and ensuring that carers’ voices are central to service design and decision-making.

However, systemic barriers persist. Minority carers may be reluctant to engage with mental health services due to fears of poor outcomes, discrimination, or further isolation. The double tragedy is that those who need support the most are often the least likely to receive it, as both community and systemic factors conspire to keep them from seeking help.

The Importance of Carers’ Voices

A key focus of the National Ethnic Mental Health Care Forum is to ensure that carers’ voices are heard and valued. Too often, the emphasis is placed solely on patients or those with lived experience, overlooking the vital role that families and carers play. Guilt and shame can stop carers from engaging with services, making it essential for mental health systems to recognize and address cultural barriers.

Breaking the Cycle: Towards Better Support and Outcomes

Engaging with Communities

To break the cycle of guilt and shame, it is crucial to engage directly with communities. This means attending religious and cultural gatherings, listening to minority carers and patients, and understanding the specific struggles they face. Education is key!! both for carers and for mental health professionals. Training staff to appreciate community values and avoid assumptions about disengaged carers can help foster trust and collaboration.

Creating Safe, Non-Judgmental Spaces

Safe spaces where carers feel invited and heard are essential. These settings should be non-judgmental and designed to encourage open dialogue. Just like my Ethnic carer forum. Co-production, where patients and carers are involved in designing and delivering services and can help ensure that support is tailored to the needs of diverse communities.

Promoting Positive Role Models

Just as I mentioned when I spoke at the North East London NHS PCREF event, I feel that Role models play a powerful role in challenging stigma and inspiring change. Mental health trusts and systems should promote positive examples of carers who have reached out for help and benefited from support. Sharing stories and experiences can help others see that seeking help is not a weakness, but a strength.

Self-Care as Strength

Promoting self-care as a strength, rather than a weakness, is vital. Carers need to recognize that it is okay to ask for help and take time for themselves. Engaging with community leaders and faith networks can help change attitudes and reduce stigma, using trusted voices to advocate for better understanding and support.

The Path Forward: Building Inclusive Mental Health Services

Co-Production and Service Design

Including carers in service design and decision-making is essential for building inclusive mental health services. By putting carers at the center of policy and practice, systems can better address the unique challenges they face and promote positive outcomes for all.

Education and Awareness

Ongoing education and awareness-raising are critical. Carers, communities, and professionals must work together to challenge stigma, promote understanding, and create environments where everyone feels supported.

The Power of Conversation

Ultimately, breaking the cycle of care guilt and shame requires open conversation and a willingness to learn from each other. By sharing experiences, listening to diverse voices, and fostering empathy, we can build stronger, more inclusive communities and mental health systems.

Conclusion

Care guilt and shame are complex, deeply rooted issues that affect unpaid carers across culturally tight-knit communities. The emotional weight of caring, compounded by cultural expectations and systemic barriers, can lead to isolation, burnout, and reluctance to seek help. Addressing these challenges requires a multifaceted approach engaging with communities, promoting positive role models, creating safe spaces, and ensuring carers’ voices are central to service design.

By working together to challenge stigma and promote understanding, we can support carers in their vital role and build mental health services that truly meet the needs of all. The journey is ongoing, but with awareness, education, and compassion, positive change is possible.

Caring for someone with mental illness? Check out our Ethnic carer forum. Dates shown below.

World Lung Cancer Day 2025: Honoring Unpaid Carers & Fostering Compassion

By Matthew McKenzie

On this World Lung Cancer Day (1st of August), we spotlight not only the impact of lung cancer itself, but also theose behind the scenes the unpaid family members, friends, and carers who provide unwavering love, support, and strength.

In this 8-minute video, hosted by myself from A Caring Mind, I explore:

The profound emotional and physical toll of caring for someone with cancer
The critical need for early detection, expanded research funding, and global health equity
The indispensable role of families and unpaid carers—whose contributions often go unrecognized

I also introduce major organizations leading the lung cancer fight:

European Respiratory Society (ERS) – promoting lung health through education, early diagnosis, policy advocacy, and improved treatment pathways
Forum of International Respiratory Societies (FIRS) – uniting global respiratory health organizations to advocate for prevention, clean air, and equitable access to care
Lung Cancer Foundation of America (LCFA) – funding innovative lung cancer research and amplifying the voices of patients and survivors to raise awareness and reduce stigma
Lung Cancer Research Foundation (LCRF) – accelerating research, supporting affected individuals, and organizing global awareness initiatives like World Lung Cancer Day

In the video I remind that behind the tragic statistic of over 1.6 million annual deaths worldwide, are stories of resilience and compassion: nights spent advocating in hospitals, hands held during chemotherapy, and hope sustained in the darkest moments.

What You Can Do:

Share the video to raise awareness
Support carers through mental health resources and recognition
Advocate for policies that include carers in healthcare support systems
Approach lung cancer conversations with empathy—not stigma

Today, we honor not just the patients, but those who stand beside them—quietly, persistently, lovingly.

Your Voice Matters: Join the Ethnicity and Breast Cancer PPI Group

By Matthew McKenzie (facilitator of National cancer carer forum) – Caring Mind

As someone passionate about involvement and health inequalities, I’m always eager to spotlight opportunities where diverse voices can drive real change. One such opportunity is currently open through a vital new research initiative led by Oxford Population Health and Cancer Research UK.

Why This Study Matters

Breast cancer affects thousands of women every year, but not all communities are impacted equally. The risks, experiences, and outcomes can vary significantly based on ethnicity – yet we still don’t have enough evidence explaining why.

This is why Oxford researchers are launching a new study to explore how breast cancer affects women from different ethnic backgrounds, particularly African, Caribbean, Indian, Pakistani, and White British communities.

The aim is simple but essential: to improve breast cancer care for all women by understanding how ethnicity influences diagnosis, treatment, and risk.

How You Can Get Involved

The team is inviting women with personal experience of breast cancer or even those who have a strong interest in the topic to join their Patient and Public Involvement (PPI) Group.

If selected, you’ll have the opportunity to:

Share your insights in online meetings that shape how the research is done.
Help communicate findings back to the community in a clear and accessible way.
Co-develop tools and resources that empower women from all backgrounds.

This is your chance to ensure the voices of underrepresented communities are heard in life-changing research.

Why Your Voice Is So Important

As someone who has spent years advocating for marginalised communities, I can’t stress this enough: Representation in research leads to better outcomes. If women from diverse ethnic backgrounds aren’t involved in shaping breast cancer studies, critical insights will be lost and the same inequalities will continue.

By joining the PPI group, you’re not just helping researchers you’re helping your community. Your lived experience, your culture, your understanding of the challenges women face all of that brings invaluable richness to the study.

Interested? Here’s How to Take Part

If you’re ready to help shape a more inclusive and impactful breast cancer study:

🔹 Visit: https://www.ceu.ox.ac.uk/research/ethnicity-and-breast-cancer
🔹 Email: ethnicityandbreastcancer@ndph.ox.ac.uk
🔹 Or scan the QR code in the flyer shown below to express interest.

Let’s help amplify unheard voices in cancer research. Representation starts with involvement. Let’s be part of the change.

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

By Matthew McKenzie

LLS Carers Forum – July Update: Voices, Concerns & Community Strength

Welcome to the July update for the Lewisham, Lambeth, and Southwark Mental Health Carers Forum. This month’s meeting, chaired by Matthew McKenzie, provided space for powerful updates, critical reflections, and a sobering insight into national developments affecting carer support.

🔸 Growing the Carers Voice

Our forum continues to evolve, bringing together unpaid carers from across boroughs. It remains a space for empowerment, where carers can speak openly, challenge services, and influence support structures. Several attendees introduced themselves and reflected on their caring roles, often crossing borough boundaries and facing ongoing questions about their own place in the system.

🔸 Spotlight: Healthwatch Update

One of the major concerns raised was the planned abolition of Healthwatch England and its local branches, which is a development that has deeply unsettled many in our community.

Anna from Healthwatch Lambeth joined us (on her day off—thank you, Anne!) to explain what’s happening:

Healthwatch functions—listening to service users, signposting, and enter-and-view visits, which are set to be absorbed by local authorities and ICBs.
As a statutory body, Healthwatch cannot be dissolved without legislation, so operations continue for now.
Carers voiced serious concerns over the loss of Healthwatch’s independence and trust, especially as a safe channel for feedback.

Anne reminded us: Healthwatch is still active and listening. A final report on black men’s experiences in Lambeth mental health services is due by mid-August.

🔸 Key Questions Raised

How will services preserve independent feedback mechanisms once Healthwatch is gone?
What accountability structures will replace them?
What are the implications of the broader wave of health service body consolidations?

🔸 Updates from the Ground

We also heard from other carer members:

A carer from Lewisham shared feedback she submitted to the Lewisham Unpaid Carers Forum regarding carer engagement, with little response so far unfortunately highlighting an all-too-common issue.
Other Carers reflected on Lambeth’s carer engagement structures, noting some decline in carer-led decision-making over the years.
Another Carer emphasized the importance of real, consistent carer champions within NHS teams particularly in mental health crisis services.

🔸 Carers Forum Reflections

Matthew provided a helpful comparison between Lewisham and Lambeth carer engagement models. While Lewisham has a formal Unpaid Carers Forum, its independence is limited. Lambeth’s model leans more on the collaborative network and carer support groups. Both boroughs face challenges in consistency, clarity, and co-production.

A concern raised repeatedly: carer champions are often named but rarely visible and sometimes, not even known by their own teams.

📅 Next Forum: August 25 or 26

Due to the bank holiday, the next forum will likely be held on August 26. We’ll aim to have a guest speaker and will explore new ways for carers to hold services to account especially in light of the potential Healthwatch closure.

If you’d like to contribute to future discussions or attend the next forum, please reach out. This is your space.

📣 Let’s continue to speak up, stand together, and push for better mental health support for all carers.

Hospital Carers Discharge Meeting Update July 2025

Posted: July 2025
By: Matthew McKenzie

In July 2025, we held another meeting of the London Hospital Discharge Carers Forum, which brings together carer centres, NHS professionals, and lived experienced unpaid carers to explore how we can better support unpaid carers through the complex hospital discharge journey.

With key developments shared, questions raised, and future opportunities on the table, I’m sharing this blog to ensure everyone is informed.

A Focus on Hospital Discharge but With Carers at the Centre

The forum continues to highlight how vital carer centres are in delivering effective, compassionate discharge support. But alongside that recognition comes rising expectations: better digital access, stronger links with acute hospital teams, more formal involvement in care planning, and even new digital tools to manage carer identity and input.

Our role is growing and so is the need for collective visibility and coordinated action.

Key Themes from July’s Discussion

1. NHS England Hospital Discharge Toolkit & Care Contingency Plan
As an involved carer, I delivered the NHS England update. The main message? The Care Contingency Plan (CCP) is becoming a key focus across the system. There are planning sessions due in September, and carer centres might be asked whether they can take on CCP delivery alongside existing carers assessments.

This triggered a crucial question: Will additional funding or contractual support be offered to carer centres taking on CCPs? because we can’t afford to quietly absorb additional workload without clarity on resources or expectations.

2. Digital Tools – NHS App & Carer Self-Identification
With the growing digitisation of NHS services, there are plans to enable carers to self-identify via a digital route. The Universal Care Plan (UCP) is being built into the NHS app, but there’s confusion about whether a separate “carer app” is being developed too.

We’ve asked NHS England for clarification: Will carers be expected to use one NHS app to manage both contingency plans and carer registration, or will multiple systems be introduced? The answer will have implications for how we support carers with digital skills and accessibility.

3. The Bigger Picture – NHS 10-Year Plan and Local Adaptation
We explored how the new 10-Year NHS Plan mentions carers primarily in the context of discharge, but offers little in terms of direct support or investment in carers themselves. Several carer centres raised concerns about being seen only as a means to improve discharge outcomes, rather than as partners in their own right.

That said, some centres are using the plan as an opportunity, working with local Integrated Care Boards (ICBs) to adapt and influence how the priorities are rolled out locally, including integration with neighbourhood health centres and walk-in clinics.

Peer Learning and Local Centre Updates

As always, our meeting included practical insights from carer centres embedded in local hospitals. Topics included:

Establishing hospital-based carer hubs and information desks.
Hosting monthly drop-ins for carers on specific wards (e.g. stroke and frailty).
Using ward rounds to identify and build relationships with staff willing to act as carer champions.
Overcoming challenges in gaining visibility, sustaining presence, or maintaining resource levels for in-hospital work.
Planning carers coffee mornings and pop-up stands to increase footfall and engagement.

For newer hospital-based carer workers, this space proved invaluable as a place to learn from colleagues, gather ideas, and avoid isolation.

Project Developments: What Centres Need to Know

Several borough-wide and London-wide initiatives are taking shape that could directly affect how carer centres operate in coming months:

A standard operating procedure for hospital discharge, currently being developed across South East London, is aiming to streamline how carers are engaged at discharge, with pilot sites starting this September.
In North Central London, work is underway on a web portal that makes it easier for hospital and emergency staff to refer carers into local support services including from the London Ambulance Service.
Carer Centres in several areas are starting or refreshing carer charters, carer passports, and surveys designed to codify carer involvement and measure experience across hospital pathways.
Carer support workers at one major South London hospital are re-establishing visibility post-staff transition. Efforts are underway to build new ward-level relationships and identify carer champions among staff. The centre is also exploring monthly carer drop-ins, asking the group for ideas on what works well and what doesn’t.
One East London carer centre has established a hospital-based hub on a specific ward floor, acting as a go-to space for carers needing support or information. They also run monthly drop-in sessions on elderly/frailty and stroke wards conditions where family involvement in discharge planning is often critical.

These projects are at different stages, but all point to one thing: carer centres are being asked to operate more visibly, more formally, and more digitally. It’s essential we shape this process and not just respond to it.

With NHS England’s CCP work moving fast and carer integration into digital systems ramping up, carer centres can no longer afford to remain on the sidelines.

We have a chance to be informed of policy changes early not after implementation.
Carer centres and hospitals can raise concerns about workload, training, and funding before it’s too late.
Newer or isolated workers benefit from collective knowledge-sharing and support.

This is not just another meeting, it’s one of the few cross-borough forums focused squarely on carer centres in the acute hospital context.

Looking Ahead: September Session

Our next meeting will be held usually the last week of September.

Let’s not let carers be an afterthought. Let’s make sure carer centres are seen, heard, and properly resourced.

National Schizophrenia Awareness Day: Support & Stigma

Understanding Schizophrenia: Breaking the Silence and Challenging Stigma

Schizophrenia remains one of the most misunderstood mental health conditions, often shrouded in myths, misconceptions, and stigma. As National Schizophrenia Awareness Day took place on July 25th, it is an opportune moment to reflect on the realities of living with schizophrenia, the challenges faced by those affected, and the crucial role of unpaid carers.

This article taken as a transcript from my video delves into the importance of awareness, the lived experiences of individuals and their families, and the collective responsibility to foster understanding and support.

The Significance of National Schizophrenia Awareness Day

National Schizophrenia Awareness Day, observed annually on July 25th in the UK, is more than just a date on the calendar. It is a day dedicated to raising awareness, challenging stigma, and building understanding around schizophrenia which is a condition that affects approximately one in every 100 people in the UK. The day is spearheaded by organizations such as Rethink Mental Illness, Change Mental Health in Scotland, Adared Recovery in Wales, and Mindwise in Northern Ireland. Together, these organizations form Mental Health UK, a collaborative effort to provide vital support and advocacy for those living with schizophrenia and their carers.

What is Schizophrenia?

Schizophrenia is a complex mental health condition characterized by a range of symptoms, including hallucinations, delusions, and disorganized thinking. However, it is essential to recognize that schizophrenia is not a one-size-fits-all diagnosis. The experience of schizophrenia exists on a spectrum, with each individual’s journey being unique. For some, symptoms may be more pronounced, while others may experience periods of stability and recovery.

Common Symptoms

Hallucinations: Sensing things that are not present, such as hearing voices.
Delusions: Strongly held false beliefs that are not based in reality.
Disorganized Thinking: Difficulty organizing thoughts, leading to incoherent speech or trouble concentrating.

Despite these clinical descriptions, it is crucial to remember that schizophrenia is, above all, a human experience. The condition affects not only the individual but also their families, friends, and communities.

The Human Experience: Beyond the Diagnosis

Too often, the narrative around schizophrenia is dominated by fear, misunderstanding, and negative stereotypes. Individuals living with schizophrenia frequently face stigma, isolation, and discrimination not only just from society at large, but sometimes even within the mental health system and healthcare services themselves. This stigma can be even more pronounced for those from minority groups, compounding the challenges they already face.

The Impact of Stigma

Stigma surrounding schizophrenia can have far-reaching consequences. It can:

Discourage individuals from seeking help or treatment.
Lead to social isolation and exclusion.
Affect employment and educational opportunities.
Create barriers to accessing quality healthcare.

Challenging these misconceptions requires a collective effort to educate the public, promote empathy, and highlight the real stories of those living with schizophrenia.

The Unseen Heroes: Unpaid Carers

While much attention is rightly given to those living with schizophrenia, there is another group whose contributions often go unrecognized—unpaid carers. These are the family members, close friends, partners, and loved ones who provide daily support to individuals with schizophrenia. Their role is both vital and demanding, yet their voices are frequently underrepresented in policy discussions, service planning, and awareness campaigns.

Who Are Unpaid Carers?

Unpaid carers are individuals who, without formal training or compensation, dedicate their time and energy to supporting someone with schizophrenia. This support can take many forms, including:

Emotional Support: Listening, comforting, and advocating for their loved one.
Crisis Management: Staying up late, managing emergencies, and ensuring safety.
Practical Assistance: Helping with daily tasks, medication management, and appointments.
Financial Support: Bearing the costs associated with care, often at personal expense.

The burdens carried by unpaid carers are not just emotional but can also be financial and physical. Despite their critical role, they often receive limited support and recognition.

The Lived Experience of Carers

Many carers, like the speaker’s own mother, navigate the complexities of supporting a loved one with schizophrenia with little guidance or acknowledgment. They become advocates, crisis managers, and emotional anchors, often at the expense of their own well-being. The lack of formal training and support can leave carers feeling isolated and overwhelmed.

Building a Better Future: What Needs to Change

Raising awareness about schizophrenia is not just about increasing knowledge—it is about fostering a culture of care, action, and inclusion. To truly support those affected by schizophrenia and their carers, several key areas need attention.

1. Improving Services and Support

Mental health services must be designed to listen to and address the needs of both individuals with schizophrenia and their carers. This includes:

Accessible Support: Ensuring timely access to mental health services and crisis intervention.
Carer Involvement: Actively involving carers in care planning and decision-making.
Tailored Resources: Providing information, training, and respite for carers.

2. Promoting Inclusive Research

Research into schizophrenia should not only focus on clinical outcomes but also incorporate the experiences of unpaid carers. Their insights are invaluable in understanding the full impact of the condition and in developing effective interventions.

Participatory Research: Engaging carers as partners in research projects.
Holistic Approaches: Studying the social, emotional, and economic effects of schizophrenia on families.

3. Educating the Public

Public education is essential to dispel myths and challenge outdated beliefs about schizophrenia. Awareness campaigns should:

Highlight Lived Experiences: Share real stories from individuals and carers.
Combat Stereotypes: Address common misconceptions and promote accurate information.
Encourage Empathy: Foster understanding and reduce fear and prejudice.

4. Policy and Advocacy

Policymakers must recognize the contributions of unpaid carers and ensure their needs are reflected in mental health policies. This includes:

Carer Rights: Protecting the rights of carers in the workplace and healthcare settings.
Financial Support: Providing financial assistance and benefits to carers.
Representation: Including carers in policy development and service evaluation.

The Power of Awareness: Moving Beyond Knowledge

Awareness is not a passive state, it is an active commitment to care, act, and include others. National Schizophrenia Awareness Day serves as a reminder that understanding schizophrenia goes beyond statistics and symptoms. It is about recognizing the humanity of those affected, valuing the contributions of carers, and working together to create a more inclusive and supportive society.

Taking Action: How You Can Help

Everyone has a role to play in challenging stigma and supporting those affected by schizophrenia. Here are some ways you can make a difference:

Educate Yourself: Learn about schizophrenia from reputable sources and listen to the experiences of those affected.
Challenge Stigma: Speak out against stereotypes and discrimination when you encounter them.
Support Carers: Offer practical help, emotional support, or simply a listening ear to carers in your community.
Advocate for Change: Support policies and organizations that promote mental health awareness and carer rights.
Share Awareness: Use your voice and platforms to spread awareness, especially on days like National Schizophrenia Awareness Day.

Personal Reflections: The Importance of Inclusion

As highlighted in the video, awareness is not just about knowing—it is about caring, acting, and including others. The journey of living with schizophrenia, or supporting someone who does, is often marked by resilience, compassion, and hope. By listening to and amplifying the voices of those with lived experience, we can build a more understanding and supportive world.

The Role of Community

Community support is vital for both individuals with schizophrenia and their carers. Whether through peer support groups, advocacy organizations, or informal networks, connection and solidarity can make a significant difference. Communities that prioritize mental health and inclusion are better equipped to challenge stigma and provide meaningful support.

The Value of Recognition

Recognition of the efforts and sacrifices made by unpaid carers is long overdue. Their dedication sustains individuals and families, often in the face of immense challenges. By acknowledging and supporting carers, we not only improve their well-being but also enhance the quality of care for those living with schizophrenia.

Looking Ahead: Hope and Progress

While the challenges associated with schizophrenia are significant, there is reason for hope. Advances in research, growing public awareness, and the tireless efforts of advocacy organizations are paving the way for a more inclusive and supportive future. By working together—individuals, families, communities, and policymakers—we can break the silence, challenge stigma, and ensure that no one faces schizophrenia alone.

A Call to Action

As National Schizophrenia Awareness Day approaches, let us commit to more than just awareness. Let us strive for understanding, compassion, and action. Whether you are living with schizophrenia, supporting a loved one, or simply seeking to learn more, your voice and efforts matter. Together, we can build a society that values every individual and supports every carer.

Conclusion

Schizophrenia is a complex and deeply human experience, affecting not only those diagnosed but also their families, friends, and communities. National Schizophrenia Awareness Day is a powerful reminder of the importance of awareness, inclusion, and action. By challenging stigma, supporting unpaid carers, and advocating for better services and understanding, we can create a world where everyone affected by schizophrenia is valued, supported, and empowered.

Let us use this day and every day to listen, learn, and act. Share stories, challenge myths, and offer support. In doing so, we honor the resilience of those living with schizophrenia and the dedication of their carers, building a more compassionate and inclusive future for all.