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.
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.
As the NHS looks to the future with its ambitious 10-Year Plan, one critical group continues to be overlooked cancer carers, although I am not forgetting Mental Health carers. These are the unpaid family members, friends, and loved ones who provide essential care and emotional support to people living with cancer.
While the plan addresses key priorities like digitalization and community-based health reform, it fails to fully recognize the vital role of caregivers in our healthcare ecosystem.
The blog is a transcript of my video, which you can watch below.
Reform Through Inclusion
The NHS 10-Year Plan aims to reshape health services by emphasizing digital tools, preventive care, and stronger local networks.
These initiatives are undoubtedly important. But without recognizing and integrating the contributions of cancer caregivers, the plan risks missing a vital component of patient care.
The Invisible Workforce
Caregivers are often the unsung heroes of cancer care. They manage appointments, administer medications, provide emotional support, and serve as advocates all while coping with their own mental and physical toll.
Challenges Faced by Cancer Carers:
Mental Health Impacts: The stress, anxiety, and emotional burden can be overwhelming.
Decision Fatigue: Carers are often thrust into complex medical decision-making without adequate support or guidance.
Lack of Recognition: Despite their contributions, caregivers are rarely acknowledged as part of the healthcare team.
A Call for Systemic Change
The inclusion of carers in healthcare reform isn’t just an ethical necessity it’s a strategic imperative. By empowering carers, we enhance patient outcomes, reduce strain on NHS services, and promote more holistic care.
Recommendations for Inclusion:
Training for Carers: Equip caregivers with tools to better navigate health systems and support patient needs.
Support Services: Invest in respite care, mental health support, and caregiver-specific community services.
Recognition in Policy: Classify caregivers as essential stakeholders in healthcare planning and delivery.
Co-Production: Designing Services With Carers
One of the most powerful messages from the discussion is the importance of co-production. That means actively involving carers in designing and shaping NHS services not just consulting them after the fact.
Co-Production Actions:
Involve Carers in Service Design: Make caregiver feedback a routine part of NHS planning.
Policy Advocacy: Push for legal and procedural reforms that recognize the role of carers from day one.
The Road Ahead
Cancer caregivers are not just a support system they are key partners in the healthcare journey. If the NHS truly seeks to build a more inclusive, responsive, and sustainable health system, caregivers must be central to its 10-Year Plan.
Let’s stop treating caregivers as an afterthought. Let’s make them co-creators of the future of care.
Support Sites for Cancer Carers
1. Carers UK
Provides advice, online forums, factsheets, and rights information for unpaid carers across the UK. https://www.carersuk.org
2. Carers Trust
Supports a network of local carer organisations across the UK. Offers practical help, grants, and local service finders. https://www.carers.org
A network of cancer support centres offering free emotional, psychological, and practical support to anyone affected by cancer—including carers. https://www.maggies.org
Alcohol Awareness Week is an annual event dedicated to raising awareness about the impact of alcohol on individuals, families, workplaces, and society at large. In 2025, the event will run from the 7th to the 13th of July, spearheaded by the charity Alcohol Change UK.
To watch the video version of my blog, see below. The blog is a transcript of the video.
This year’s theme, “Alcohol and Work,” brings a crucial focus to how alcohol consumption affects not just personal health, but also professional performance, workplace relationships, and overall well-being.
The Broader Impact of Alcohol
Alcohol is often viewed through the lens of personal choice and individual health. However, its effects ripple far beyond the person consuming it. The consequences of harmful drinking habits can be seen in diminished work performance, strained relationships, compromised safety, and a decline in mental health. Behind every statistic lies a human story on one that often includes addiction, isolation, and the silent struggles of those who care for someone affected by alcohol dependency.
Alcohol and the Workplace: A Hidden Challenge
The Unseen Effects on Performance and Safety
Alcohol’s impact on the workplace is multifaceted. It can lead to decreased productivity, increased absenteeism, and even safety risks, especially in roles that require high levels of attention and responsibility. The pressure to perform, long working hours, and high-stress environments can sometimes drive individuals to use alcohol as a coping mechanism. This, in turn, can create a cycle where alcohol use further impairs work performance, leading to more stress and potentially more drinking.
The Human Stories Behind the Statistics
It’s easy to overlook the personal narratives behind the numbers. In the UK, approximately one in four people drink in ways that could be harmful to their health. For some, this escalates into dependency, isolation, and crisis. The journey into alcohol dependency is rarely straightforward or visible. It can be masked by a smile, hidden behind long hours at the office, or dismissed with a casual “I’m fine.” The reality is often much more complex and painful.
The Ripple Effect: Unpaid Carers and Their Silent Struggles
The Burden on Unpaid Carers
One of the most overlooked aspects of alcohol-related harm is its impact on unpaid carers. These are the partners, parents, siblings, friends, and even colleagues who quietly support someone struggling with alcohol dependency. Unpaid carers often juggle their own work and family responsibilities while shouldering the emotional and practical burdens of caring for someone else.
The challenges faced by unpaid carers are immense. Many carry this burden alone, with little support or recognition. They may sacrifice sleep, income, and their own mental health in the process. The emotional strain can be overwhelming, and the lack of support can lead to feelings of isolation and helplessness.
The Need for Recognition and Support
It’s time to shine a light on the pressure, pain, and silence that unpaid carers endure. Their contributions are invaluable, yet they often go unnoticed. Recognizing their struggles and providing them with the support they need is essential, not just for their well-being, but for the well-being of those they care for.
Breaking the Silence: The Power of Conversation
Starting the Conversation
One of the most effective ways to address alcohol-related harm is to start a conversation. Breaking the stigma surrounding alcohol dependency begins with open, honest dialogue. If you’re concerned about someone’s drinking habits, reaching out and expressing your concern can be a powerful first step. Sometimes, simply asking, “How are you doing?” can make a world of difference.
Sharing Resources and Support
In addition to conversation, sharing resources is crucial. Organizations like Alcohol Change UK provide valuable information, helplines, and support services for those affected by alcohol dependency. Sharing these resources, whether it’s a helpful video, a website, or a helpline number which can offer much-needed support to someone in need.
Supporting Unpaid Carers
For those who focus on supporting unpaid carers, it’s important to acknowledge their unique challenges. Offering a listening ear, practical assistance, or simply checking in can provide much-needed relief. Carers often feel invisible, so small gestures of support can have a significant impact.
Raising Awareness: Everyone Has a Role
Online, at Work, and in the Community
Raising awareness about the harms of alcohol and the support available is a collective responsibility. Whether it’s through online campaigns, workplace initiatives, or community events, every effort counts. The more we talk about these issues, the less people will suffer in silence.
Building a Culture of Care
Ultimately, the goal is to foster a culture of care, one where no one has to face addiction or the challenges of caring for someone with addiction alone. By working together, we can reduce the harm caused by alcohol, support one another, and create a more compassionate society.
Practical Steps for Getting Involved
1. Educate Yourself and Others
Understanding the facts about alcohol and its effects is the first step. Visit reputable sources like Alcohol Change UK to learn more about the risks associated with alcohol consumption, the signs of dependency, and the support available.
2. Start Conversations
Don’t be afraid to talk about alcohol and its impact. Whether it’s with friends, family, or colleagues, open dialogue can help break down stigma and encourage those struggling to seek help.
3. Share Resources
Distribute information about support services, helplines, and educational materials. The more accessible these resources are, the more likely people are to use them.
4. Support Unpaid Carers
If you know someone who is caring for a person with alcohol dependency, offer your support. This could be as simple as checking in regularly, offering to help with practical tasks, or encouraging them to seek support for themselves.
5. Advocate for Change
Encourage your workplace or community to participate in Alcohol Awareness Week. Organize events, share information, and promote policies that support those affected by alcohol-related harm.
The Importance of Compassion and Understanding
Recognizing the Human Element
Behind every case of alcohol dependency is a person with a unique story. Compassion and understanding are essential in supporting those affected. Avoid judgment and focus on offering support and encouragement.
The Role of Empathy in Recovery
Empathy can be a powerful tool in helping someone change their relationship with alcohol. Listening without judgment, offering encouragement, and being patient can make a significant difference in someone’s journey to recovery.
The Role of Workplaces in Addressing Alcohol-Related Harm
Creating Supportive Environments
Workplaces have a unique opportunity to support employees affected by alcohol-related harm. This can include providing access to counseling services, promoting work-life balance, and fostering a culture where employees feel comfortable seeking help.
Implementing Policies and Training
Employers can implement policies that address alcohol use in the workplace, provide training for managers on how to support employees, and ensure that support services are readily available.
Encouraging Peer Support
Peer support programs can be effective in helping employees feel less isolated and more supported. Encouraging open dialogue and creating safe spaces for discussion can help break down barriers to seeking help.
The Ongoing Challenge: Reducing Stigma
video from Alcohol Change UK
Why Stigma Persists
Stigma remains one of the biggest barriers to seeking help for alcohol dependency. Many people fear judgment or discrimination, which can prevent them from reaching out for support.
How to Combat Stigma
Education and awareness are key to reducing stigma. By sharing stories, promoting understanding, and challenging misconceptions, we can create a more supportive environment for those affected by alcohol-related harm.
Looking Ahead: Building a Supportive Future
The Importance of Continued Awareness
Alcohol Awareness Week is an important opportunity to shine a light on the challenges associated with alcohol use. However, the work doesn’t end when the week is over. Continued awareness, education, and support are essential in creating lasting change.
Working Together for Change
Change is possible when we work together. By supporting one another, raising awareness, and advocating for better support systems, we can reduce the harm caused by alcohol and build a more compassionate society.
Resources for Support
Alcohol Change UK: alcoholchange.org.uk – A leading charity providing information, support, and resources for those affected by alcohol-related harm.
Helplines and Support Services: Many organizations offer confidential helplines and support services for individuals and carers.
Workplace Support: Check with your employer about available support services, employee assistance programs, and mental health resources.
Conclusion: A Call to Action
Alcohol Awareness Week 2025 is a vital opportunity to reflect on the impact of alcohol in our lives, workplaces, and communities. By starting conversations, sharing resources, supporting unpaid carers, and raising awareness, we can make a real difference. Let’s work together to understand the harm that alcohol can cause, support one another, and build a culture of care, because no one should have to face addiction or care for someone with addiction alone.
Let’s make this Alcohol Awareness Week a turning point for greater understanding, compassion, and support.
The Digital Revolution in the NHS: Why Unpaid Carers Must Be at the Heart of Change
From Matthew McKenzie – Carer activist
Below is a transcript of my video
The National Health Service (NHS) in the UK is undergoing a profound transformation, one that is being described as a technological revolution. With the launch of the NHS 10-year plan, the focus is shifting towards digitization, artificial intelligence, and centralized health information. While these changes promise to streamline care and improve outcomes, there is a critical group whose needs and voices must not be overlooked: unpaid carers.
Unpaid carers which I feel are often family members or close friends often play a vital role in supporting those with long-term health conditions, including mental illness and cancer. Their contributions are immense, yet they are frequently left on the sidelines when it comes to digital innovation in healthcare. This article explores why unpaid carers must be central to the NHS’s digital future, the challenges they face, and the steps needed to ensure they are empowered, included, and supported.
Understanding the Role of Unpaid Carers
The Backbone of Community Care
Unpaid carers are the unsung heroes of the healthcare system. They manage medications, coordinate appointments, provide emotional support, and often handle emergencies. Their work extends far beyond what is visible to the public or even to healthcare professionals. When patients leave hospitals or clinics, it is usually unpaid carers who take on the responsibility of ongoing care at home.
The Double Burden
Caring for someone with long-term illness can be demanding, both physically and emotionally. Many carers juggle multiple roles, often putting their own needs last. The demands of caring can make it difficult to keep up with new technologies or to seek out digital tools that could make their role easier. This invisibility and self-sacrifice can lead to carers being left behind as the NHS moves forward with its digital agenda.
The NHS 10-Year Plan and the Digital Revolution
What’s Changing in the NHS?
The NHS 10-year plan marks a significant shift towards digital healthcare. Key elements include:
Expansion of the NHS App: The NHS app is being developed to allow for easier booking of appointments, prescription management, and access to centralized health information.
Integration of Artificial Intelligence: AI will be used to process the growing volume of health data, supporting healthcare workers in making faster, smarter decisions.
Digital Health Records: Patient records will be digitized and made accessible across services, ensuring continuity of care and reducing the need for patients and carers to repeat their stories to every professional.
The Promise of Technology
Digitization offers many potential benefits for carers. With the right support, technology can:
Reduce waiting times and streamline appointment bookings.
Provide real-time access to health information and test results.
Eliminate the need to repeatedly explain a patient’s history to different professionals.
Help carers stay organized and informed, improving the quality of care they provide.
The Risks of Exclusion
Barriers to Digital Inclusion
Despite the promise of technology, there are significant barriers that can prevent unpaid carers from benefiting:
Digital Literacy: Not all carers are comfortable with technology, and some may lack the skills or confidence to use digital tools effectively.
Access to Devices: Smartphones and other devices capable of running advanced health apps can be expensive, putting them out of reach for many carers who may already be financially stretched.
Design Oversights: Many digital health tools are not designed with carers in mind, focusing instead on patients or healthcare professionals.
Time Constraints: The demands of caring leave little time for carers to research or learn about new digital resources.
The Danger of Being Left Behind
If unpaid carers are not included in the digital transformation, there is a real risk that they will be excluded from important aspects of care planning and decision-making. This could lead to poorer outcomes for both carers and those they support, and ultimately place greater strain on the NHS as a whole.
Making Digital Healthcare Work for Carers
The Need for Training and Support
To ensure carers can benefit from digital innovations, targeted training and support are essential. This could include:
Workshops and Training Sessions: Carer centers and NHS trusts can offer training on how to use digital tools, such as the NHS app.
Recovery Colleges: In the mental health sector, recovery colleges can help upskill carers in using technology to support their loved ones.
Accessible Design: Digital tools should be designed with carers in mind, ensuring they are intuitive and easy to use.
Inclusion in Care Records and Decision-Making
Carers must be recognized and included in digital care records, with appropriate safeguards for confidentiality. This would allow them to:
Be easily identified and referred to support services.
Access relevant health information to better support the person they care for.
Participate in care planning and decision-making processes.
Co-Designing Digital Tools
Carers should have a say in the design and rollout of digital health tools. Their lived experience provides invaluable insights into what works and what doesn’t. Involving carers from the outset can ensure that digital innovations truly meet their needs.
Practical Steps for Carers
Engaging with the NHS App
Carers should be encouraged to explore the NHS app and see how it can support them in their role. This might include:
Booking appointments for the person they care for.
Managing prescriptions and medication reminders.
Accessing up-to-date health information and test results.
Seeking Support and Sharing Feedback
Carers should not hesitate to ask their GP, pharmacist, or local carer organizations about digital options and support. Providing feedback on what works and what doesn’t is crucial for improving digital services.
Building a Community of Support
Carer groups and forums can play a vital role in sharing experiences, tips, and support related to digital healthcare. By working together, carers can help each other navigate the digital landscape and advocate for their needs.
The NHS’s Responsibility: Including Carers in the Digital Future
Recognizing Carers as Partners, Not Visitors
Unpaid carers are not just visitors in the healthcare system as they are integral to its functioning. Their inclusion in the digital revolution is not optional; it is essential for the sustainability of the NHS.
Reducing Pressure on the System
By supporting carers with digital tools and resources, the NHS can help them provide better care, reducing the pressure on hospitals and social care services. Excluding carers would only shift the burden back onto the NHS, undermining the goals of the 10-year plan.
Building Digital Solutions with People at the Center
Technology alone cannot solve the challenges of healthcare. Digital solutions must be built with the people who use them patients, carers, and professionals at the center. This means ongoing dialogue, co-design, and a commitment to accessibility and inclusion.
Looking Ahead: Embracing Change Together
The Constant of Change
Technology is always evolving, bringing both challenges and opportunities. For carers, staying informed and engaged with digital developments is key to ensuring they are not left behind.
Shaping the Future
Carers have a unique opportunity to shape the future of healthcare. By participating in the digital revolution, sharing their experiences, and advocating for their needs, they can help create a system that works for everyone.
A Call to Action
Whether you are a carer, a healthcare professional, or someone interested in the future of the NHS, now is the time to act. Embrace digital tools, seek out training and support, and make your voice heard. Together, we can ensure that the NHS’s digital future is inclusive, effective, and centered on the needs of those who care.
Conclusion
The NHS’s digital revolution holds great promise, but its success depends on the inclusion of unpaid carers. By recognizing their vital role, addressing barriers to digital access, and involving them in the design and implementation of new tools, we can build a healthcare system that is truly fit for the future. Unpaid carers are not just supporting the system they are shaping it. Their voices, experiences, and needs must be at the heart of the NHS’s digital journey.
Understanding the Hidden Struggles of Ethnic Minority Carers Caring for a loved one with mental illness can come with challenges, but for many ethnic minority carers, the journey is made more challenging by cultural stigma, language barriers, and a deep-rooted mistrust of formal health systems.
These carers often carry immense responsibility behind closed doors, with little recognition or support. Despite their dedication, many avoid reaching out to mental health services—not because they don’t care, but because past experiences have taught them to be cautious, even fearful.
What Is Institutional Distrust and Why Does It Matter? Institutional distrust refers to the lack of confidence in systems like healthcare, social care, or government services. For ethnic minority carers, this distrust is often grounded in real experiences of discrimination, cultural insensitivity, or the fear of losing control over a loved one’s care.
When services fail to understand or respect a carer’s background, the result is silence and isolation leaving carers to cope alone, without the help they may desperately need.
A Short Video Giving Voice to Unheard Stories To shed light on this important issue, I’ve created a short video presentation: “Institutional Distrust: Why Many Ethnic Carers Avoid Formal Services”
This video draws on the voices and lived experiences of unpaid carers, especially those from ethnic minority backgrounds. It explores the emotional weight they carry, the cultural barriers they navigate, and the urgent need for services to become more inclusive, respectful, and culturally aware.
Why Sharing These Stories Matters If we truly want to support carers from all backgrounds, we must first listen and really listen to what they’re telling us. By naming institutional distrust and understanding its roots, we can begin to rebuild trust and create spaces where carers feel safe to seek help.
Please watch and share the video, and let’s continue the conversation about what real support looks like for ethnic minority carers in mental health.
The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.
Peer Support: Insights from Experience
Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.
“Caring feels like towels.” “Smells like sweat.” “Sounds like silence.” These are not lines from a published anthology, but heartfelt expressions from unpaid carers who meet every month in a quiet online space to write, reflect, and reconnect—through poetry.
Welcome to the Ealing Carers Poetry Workshop, an online community gathering for carers, hosted on the last Friday of each month at 6 PM. It’s free, friendly, and, for many, deeply healing.
Why Poetry? Why Now?
For unpaid carers, life is often consumed by routines, responsibilities, and quiet sacrifices. There’s little time to stop and process the emotional weight of the role, let alone articulate it. That’s where poetry comes in.
Poetry doesn’t demand polished grammar or clever rhymes. It simply asks: What do you feel? And from that question, remarkable truths begin to emerge.
In a recent session, one carer described how “caring tastes like sweet and sour”—a vivid metaphor for the moments of tenderness mixed with exhaustion, patience, and the daily challenge of giving so much of oneself.
Another shared, “Caring feels like a balloon… slowly inflating until it might burst.” The group nodded. They understood. No further explanation needed.
More Than Words
Each workshop is a gentle hour of guided prompts, group sharing (if you feel like it), and poetic reflection. Some come to listen. Some come to write. All leave feeling a little more grounded, and a little less alone.
Here’s what you can expect:
Creative prompts to help spark inspiration
No pressure to share if you’re not ready
A safe, confidential space led with empathy
A supportive community that “gets” the highs and lows of caring
Gentle encouragement to save and revisit your poetry as a personal record
One participant put it perfectly:
“You don’t have to be a poet. You just need to be willing to put words to what you feel.”
Healing Through Expression
We often talk about self-care for carers, poetry is one powerful, practical form. It’s a creative release that helps untangle emotions that don’t have easy answers. It can reflect joy, grief, humour, fatigue, hope. It can be messy. It can be raw. But above all, it’s yours.
As the facilitator beautifully says,
“Poetry holds up a mirror. What you see in it is up to you.”
For many carers, this monthly workshop has become a lifeline. A moment of peace. A reminder that their experiences matter.
If you are an unpaid carer, then Join Us – You Are Welcome
Whether you’re new to writing or simply curious, we invite you to take an hour for yourself.
🗓️ When: Last Friday of every month 🕕 Time: 6:00 PM (UK time) 🌐 Where: Online – attend from the comfort of your own home 🎟️ Reserve your free place here: 👉 Ealing Carers Poetry Workshop – Eventbrite
Grab a notebook. Pour a cup of tea. Come write with us.
Why Unpaid Carers Should Join Our Mental Health Carers Forum and Why Oxleas & Our Local Authorities Should Listen
By Matthew McKenzie
Caring for a loved one with mental health needs is a journey full of challenges, isolation, and too often lack of support. That’s why we run a dedicated Mental Health Carers Forum with Greenwich Carers Centre that brings together unpaid carers from across Greenwich and sometimes other boroughs since Oxleas covers Bromley and Bexley.
In our most recent forum, carers opened up about what it’s really like to navigate services and support their loved ones. The message was clear: unpaid carers are doing more than ever often alone and we need to work together to make sure they are not left behind.
The Power of Peer Support
One carer said:
“I’m a sandwich carer — looking after my elderly parents and my daughter with complex needs. Groups like this are a lifeline. It’s a space to share, learn, and recharge.”
For many carers, peer support is one of the few places where they are truly heard. Another participant explained:
“It helps so much to hear from others going through similar things. It’s the only way I know what services are available and what’s changing.”
Challenges That Carers Face
Through the forum, we heard repeated concerns:
Lack of joined-up care between GPs and mental health services
Delays in care planning and assessments — or carers being excluded altogether
Confusing systems — carers are often left chasing up GPs or social workers themselves
Failure to take carers’ expertise seriously in assessments and planning
Emotional strain — many carers at breaking point, needing better respite and emotional support
One mother of three autistic children shared:
“I told them my son cannot tolerate bright light that’s why the curtains were drawn. But the assessor just complained about the curtains and parking. They didn’t listen to what my son really needs.”
Presentation: Advocating for a Loved One During and After Mental Health Crisis
Matthew McKenzie delivered a detailed presentation on how unpaid carers can effectively advocate for their loved ones, particularly around mental health services.
Key points included:
Carers are not just supporters, they are also advocates for their loved ones
Building relationships with key professionals (GP, care coordinator, psychiatrist, social worker) is crucial
Carers should keep records of symptoms, interventions and communications to support advocacy
During a crisis, carers should:
Stay calm
Be factual about symptoms and risks
Be assertive (but respectful) in requests for urgent action
Request risk assessments and ask for information to be recorded
Understand confidentiality rights and use carers’ rights under the Care Act
The importance of self-care for carers, advocacy can be exhausting, and carers must seek peer support and breaks
Carers should also use the complaints process and escalate concerns when services fail
A Call to Oxleas NHS and Local Authority
We know big changes are coming, NHS England reorganisations, funding pressures, staff reductions. But one thing won’t change: the system depends on unpaid carers.
That’s why we urge Oxleas NHS Trust and the local authorities to:
✅ Regularly engage with this forum to hear carers’ voices ✅ Ensure carers are meaningfully included in care plans and reviews ✅ Offer more training and support for staff on carer involvement ✅ Improve clarity on who carers can contact in a crisis ✅ Work with us to strengthen co-production, not just in theory, but in practice
As one member put it:
“If the services won’t be there in full anymore — then carers will have to do even more. But we can’t do it if we’re broken.”
Join Us
If you’re an unpaid carer supporting someone with mental health needs, whether you’re new to caring, or have years of experience, please come along.
You’ll find a space to share, learn advocacy skills, and connect with others who truly understand. We also run a peer WhatsApp group, ask if you’d like to join.
Together we are stronger and louder. The more carers attend, the harder it is for services to ignore us.
For more info or to attend the next forum: contact
Understanding Learning Disability Week: A Time to See, Value, and Empower
Learning Disability Week is an annual event dedicated to raising awareness, promoting understanding, and challenging the stigma surrounding learning disabilities. Each year, this important week brings together individuals, families, carers, organizations, and communities to celebrate the achievements of people with learning disabilities and to advocate for a more inclusive society. The 2025 theme, “Do You See Me?”, calls on everyone to look beyond labels and truly recognize the unique individuals behind them, as well as the invaluable contributions of those who support them.
Before continuing reading my blog, you can watch the video version below
The Importance of Learning Disability Week
I feel Learning Disability week is a time to reflect on the progress made, the challenges that remain, and the collective responsibility we all share in creating a society where everyone is seen, heard, and valued. The week is proudly led by Mencap, a national charity at the forefront of learning disability advocacy, providing resources, easy-read guides, and campaigning materials to help spread the message far and wide.
Mencap works in partnership with local authorities, NHS trusts, and other charities such as Choice Support, Kids, Brandon Trust, and KeyRing. The campaign is also championed in the media by organizations like The Big Issue and supported by community groups, carers, and arts organizations. This collaborative approach ensures that the message of inclusion and empowerment reaches as many people as possible.
The Theme: “Do You See Me?”
Looking Beyond the Label
The 2025 theme, “Do You See Me?”, is a powerful call to action. It asks us to look beyond the diagnosis or label of “learning disability” and to see the person—their talents, ambitions, and unique voice. People with learning disabilities are artists, colleagues, friends, athletes, and advocates. They are individuals with dreams, skills, and stories to share.
Too often, society focuses on what people with learning disabilities cannot do, rather than celebrating what they can achieve. This year’s theme challenges us to change that narrative. It’s about recognizing the whole person and valuing their contributions in every aspect of life.
Recognizing Unpaid Carers
Behind many individuals with learning disabilities are unpaid carers being parents, siblings, young carers, friends, and loved ones—who provide essential support, often with little recognition. These carers play a vital role in the lives of those they support, helping them to navigate daily challenges, access services, and pursue their goals. Learning Disability Week is also a time to acknowledge and celebrate the dedication and resilience of these carers.
The Aims of Learning Disability Week
Celebrating Achievements
One of the central aims of Learning Disability Week is to celebrate the achievements of people with learning disabilities. Whether it’s excelling in the arts, sports, advocacy, or everyday life, these accomplishments deserve to be recognized and applauded. By sharing success stories, we can inspire others and challenge stereotypes.
Raising Awareness of Challenges
While there is much to celebrate, it’s also important to acknowledge the challenges that people with learning disabilities face. These can include barriers to education, employment, healthcare, and social inclusion. Learning Disability Week provides a platform to highlight these issues, share lived experiences, and advocate for change.
Sharing Good Practice and Improving Services
Learning Disability Week is an opportunity to share examples of good practice and to learn from one another. By highlighting innovative approaches and successful initiatives, we can help improve services and support for people with learning disabilities. This collaborative spirit is essential for driving progress and ensuring that everyone has the opportunity to thrive.
Campaigning for Equality and Inclusion
At its core, Learning Disability Week is about campaigning for equality and inclusion. It’s about challenging discrimination, breaking down barriers, and creating a society where everyone is treated with dignity and respect. This requires ongoing advocacy, partnership working, and a commitment to listening to the voices of people with learning disabilities and their carers.
The Power of Creativity and Self-Expression
Art as a Tool for Empowerment
Art and creativity play a vital role in self-expression, particularly for individuals with learning disabilities. Through painting, music, dance, storytelling, and poetry, people can communicate their thoughts, feelings, and experiences in powerful ways. Creative activities provide a platform for individuals to tell their stories, build confidence, and connect with others.
For many, art is not just a hobby, it’s a means of empowered communication. It allows people to express themselves on their own terms, to challenge stereotypes, and to showcase their talents. Arts organizations and community groups play a crucial role in providing opportunities for creative expression and in promoting the work of artists with learning disabilities.
Poetry and Storytelling
Poetry and storytelling are particularly powerful forms of self-expression. They allow individuals to explore themes that are important to them, to share their experiences, and to connect with others on a deep and personal level. By encouraging and supporting creative expression, we can help people with learning disabilities to find their voice and to be heard.
How to Get Involved
Celebrate Achievements
Take time during Learning Disability Week to celebrate the achievements of people with learning disabilities. Share stories, highlight successes, and recognize the contributions that individuals make to their families, communities, and society as a whole.
Share Resources and Raise Awareness
Use your voice and your platform to share resources, raise awareness, and challenge stigma. Whether it’s through social media, community events, or conversations with friends and colleagues, every action counts. Mencap and other organizations provide a wealth of resources, including easy-read guides and campaign materials, to help you get started.
Support Campaigns for Better Services
Support campaigns that advocate for better healthcare, education, and social services for people with learning disabilities. Organizations like Mencap and NHS trusts are working hard to raise awareness and improve services, but they need the support of the wider community to drive change.
Donate and Volunteer
If you are able, consider donating to organizations that support people with learning disabilities and their carers. Your contribution can help fund vital services, advocacy, and creative projects. Volunteering your time and skills is another valuable way to make a difference.
Attend Events and Webinars
Many local authorities, charities, and community groups organize events and webinars during Learning Disability Week. These provide opportunities to learn more, connect with others, and get involved in the campaign. Check out local listings and online resources to find events in your area.
Continue the Conversation
Learning Disability Week may only last for seven days, but the need for awareness, advocacy, and inclusion is ongoing. Even if you discover the campaign after the official week has ended, you can still play a part in celebrating the contributions of people with learning disabilities and supporting their rights.
The Role of Community and Collaboration
Working Together for Change
Creating a more inclusive society requires collaboration. Local authorities, NHS trusts, charities, community groups, carers, and individuals all have a role to play. By working together, sharing knowledge, and supporting one another, we can drive meaningful change.
The Importance of Visibility
Visibility is key to challenging stigma and promoting inclusion. When people with learning disabilities are seen and heard when their stories are shared and their achievements celebrated it helps to break down barriers and change perceptions. The “Do You See Me?” theme is a reminder that everyone deserves to be recognized and valued.
The Ongoing Journey Toward Inclusion
Building a Society Where Everyone Belongs
Learning Disability Week is a milestone in the ongoing journey toward a more inclusive society. It’s a time to reflect on how far we’ve come, to celebrate progress, and to renew our commitment to equality and inclusion. But the work doesn’t end when the week is over. It’s up to all of us to continue advocating for change, supporting one another, and building a world where everyone belongs.
The Power of Advocacy
Advocacy is at the heart of Learning Disability Week. Whether you are a person with a learning disability, a carer, a professional, or an ally, your voice matters. By speaking out, sharing your experiences, and supporting campaigns, you can help to create a society where everyone is seen, heard, and valued.
Resources and Further Information
Where to Find Support and Get Involved
If you want to learn more about Learning Disability Week, get involved in campaigns, or access resources, there are many organizations that can help:
Here’s your version with links included for each of the main organisations — ready for web, LinkedIn, or video descriptions:
Community Groups and Arts Organisations: These groups including disability arts initiatives like DaDaFest and local community networks offer opportunities for creative expression and community involvement.
Check the official websites and social media channels of these organizations for the latest information, events, and resources.
Conclusion
Learning Disability Week is a powerful reminder of the importance of seeing, valuing, and empowering people with learning disabilities. It’s a time to celebrate achievements, raise awareness of challenges, and advocate for a more inclusive society. By supporting campaigns, sharing resources, and promoting creativity and self-expression, we can all play a part in building a world where everyone is seen, heard, and valued—not just during Learning Disability Week, but every day of the year.
Let’s continue to work together, challenge stigma, and create opportunities for everyone to shine. Happy Learning Disability Week 2025!
A Caring Mind 