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.
About the Forum: The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.
Carers Week Collaboration Discussion
The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.
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
By Matthew McKenzie, Carer Ambassador, Cygnet Health Care
On Friday 13th June 2025, I had the privilege of attending and speaking at Cygnet Health Care’s National Carers Event, hosted at Cygnet Churchill in Lambeth, London. The event brought together carers, staff, professionals, and advocates to reflect on the vital role of unpaid carers who step up daily out of love, resilience, and responsibility, often with little recognition.
Carers Week is always a powerful reminder that caring touches us all – and Cygnet’s event this year was especially moving and informative. It offered a platform for carers to share their lived experience, influence policy, and strengthen our collective voice.
Agenda Highlights
The day opened with a warm welcome from Laura Sheridan & Shane Mills, setting the tone for a day grounded in empathy and collaboration. We heard from a range of speakers including:
Susan Hartnell-Beavis, sharing practical tools for supporting carers.
Kate Mercer and Carly Ellicott, who both championed carer involvement in care planning and research.
John Bangs OBE, who brought a national perspective on carer rights and policy.
Dr Angela Misra, who tackled the health implications of caregiving.
Julian de Takats and Matthew McKenzie (myself), focusing on empowering carers’ voices.
We also had insights from Dr Henk Swanepoel & Sophie Borg, who presented on collaborative approaches with carers in mental health services.
Written by: Matthew McKenzie – WLHT co-facilitator of ethnic carer group and Triangle of Care Community Chair
The Irish Cultural Centre in Hammersmith was filled with warmth and purpose on June 12th, as carers, professionals, and community leaders came together for the West London NHS Trust’s Carers Event in support of Carers Week 2025.
As Chair of the Triangle of Care Community and an involved carer for West London NHS Trust, I was interested in the carers conversations, and sense of solidarity among all those present.
Hello everyone, it’s Matthew McKenzie here with another lecture aimed at unpaid carers. As you can see from the title, I’m in carer activist mode, which is basically what I am. And when I say carer, I’m talking about unpaid carers, those that care for someone living with a long-term illness. In this lecture, we will focus on effective ways for carers to lobby the government and create change.
To see the video lecture, see below.
Why Lobby Now?
Urgent Issues
You might be thinking, why am I making this sort of video now? The NHS is due to undergo significant changes, which will cause a lot of problems and challenges, especially for carers.
As you might know, unpaid carers play a vital yet often overlooked role in supporting individuals with mental health needs. Their contributions provide essential support and advocacy, yet they frequently encounter significant challenges due to limited training, insufficient resources, and time constraints. This blog and video explores key strategies for holding mental health trusts accountable while empowering carers to influence and improve mental health services. The blog is aimed at carers who are involved at their local mental health NHS trust. This means that they help shape services.
The Importance of Holding Mental Health Trusts Accountable
Ensuring accountability within mental health trusts is crucial. Carers have the right to expect high-quality, effective care for their loved ones. By holding such NHS trusts to these standards, both patients and carers benefit. Accountability encompasses various aspects, including access to timely and appropriate care, the quality of treatment plans, and the consistency of care. Without these measures in place, there is a risk of declining service quality, ultimately affecting the well-being of both carers and patients. Holding Mental Health NHS trusts to account is never an easy thing, you will have to learn from carer peers and to be honest, all you have is your carer lived experience to feedback your view of services.
If you want to watch the in-depth video of this lecture, please see below.
The Role of Carers in Mental Health
Carers offer valuable insights into the needs of those they support. Their experiences are instrumental in shaping effective mental health services.
Here is another blog post aimed at those caring for a loved one living with mental illness. If you want to see the video lecture of “Advocacy & Mental Health Care Top Questions Every Carer Should Ask”. Click on the video below.
Caring for someone with a long-term mental illness is both a noble and challenging task. In today’s society, unpaid carers, often family members or close friends, play a crucial role in supporting individuals with mental health needs. Despite their importance, unpaid carers frequently navigate a complex and overwhelming landscape of rights, services, and support systems.
Hey there! Another blog post from Matthew McKenzie carer activist and author of “Experiences of Mental Health unpaid caring”. This post will look at the problem of carer assessments and trust me, there are many.
If you want to watch the more detailed video (26 mins). Please click below.
The Complex Landscape of Carer Assessments: Challenges and Solutions
Caring for someone with long-term ill health presents a unique set of challenges. One crucial element in ensuring caregivers receive the support they need is the carer assessment. However, the current system of carer assessments is fraught with problems. In this article, we will delve into the multifaceted issues surrounding carer assessments and explore potential solutions to make the process more effective and compassionate.
What is a Carer Assessment?
A carer assessment is designed to identify the needs of those who are providing unpaid care for someone with long-term health issues. Carers are entitled to these assessments, which should help identify their needs and the kind of support they require. However, even with the concept in place, many caregivers remain unaware of their rights or find the process of obtaining an assessment challenging.
The Problems with Carer Assessments
Lack of Awareness and Accessibility
One of the primary issues is the lack of awareness among caregivers about their rights to an assessment. Many carers do not identify themselves as such and, consequently, do not pursue the assessment they are entitled to. This gap in awareness leads to unmet needs, whether for respite care, accessing support information, or funding specific equipment to aid in their caregiving duties.
Inconsistencies in the availability and clarity of information further exacerbate the problem. The accessibility of carer assessments varies significantly across different regions, with some local authorities setting high barriers to entry. This lack of uniformity leaves many carers without the support they need.
Focus on the Person Being Cared For
Carer assessments often prioritize the needs of the person receiving care over those of the carer. This patient-centric approach, while essential, can sideline the carer’s physical, emotional, and financial well-being. In many cases, assessors might be inadequately trained, leading to an incomplete understanding of the carer’s experiences and roles. This can result in inefficient support and a lack of appreciation for the carer’s everyday challenges.
Inconsistent Implementation
The quality and scope of carer assessments can vary significantly depending on the region. While some areas manage to provide thorough and beneficial assessments, others offer superficial or rushed evaluations. This disparity is often due to the resources and training available in different regions, leading to unequal support for carers across the UK.
Inadequate Training
A significant issue lies in the training of those performing the assessments. Without adequate training, assessors may lack a comprehensive understanding of unpaid care’s emotional, financial, and health complexities. This inadequacy can lead to inappropriate recommendations or missed support opportunities for carers, especially for those from minority groups or different cultural backgrounds.
The Emotional and Practical Challenges
Feeling Judged
The process of undergoing a carer assessment can feel intrusive and judgmental. Carers may hesitate to be honest about their struggles due to fear of being labeled as unable to cope, which could lead to unwanted interventions. This fear is particularly pronounced among young carers, who may worry about the possibility of family separation if their caregiving situation is deemed inadequate.
Time-Consuming Process
Setting aside the time and energy required for a carer assessment can add to the strain carers already feel. The process is often not user-friendly, and without adequate preparation or advocacy, carers might find it difficult to articulate their needs fully. This situation can lead to rushed or incomplete assessments, making the entire exercise feel futile.
Limited Scope and Follow-Up
Many carer assessments focus on immediate needs, neglecting long-term planning and sustainable support. This short-term focus means that carers might have to repeatedly push for assessments as circumstances change, which is both exhausting and demoralizing. Moreover, there is often an inadequate follow-up after the initial assessment, leaving carers in the same position as before, with no tangible support or improvement in their situation.
Potential Solutions
Raising Awareness
One of the first steps to improving carer assessments is raising awareness about carers’ rights and the availability of assessments. Information campaigns and outreach programs can help inform carers about the support they are entitled to, encouraging them to seek out assessments.
Streamlining the Process
Simplifying the process of accessing carer assessments is crucial. This streamlining can be achieved by standardizing forms and procedures, making the process less time-consuming and more accessible. Clear information about who is responsible for conducting the assessments and how to request one should be readily available.
Improved Training
Investing in comprehensive training for assessors is vital. Training should cover the complexities of unpaid care, including the emotional, financial, and health aspects. It is also essential to ensure that assessors understand and can address the specific needs of diverse carer groups, such as young carers and those from minority communities.
Consistent Standards
Implementing national guidelines to ensure consistency and fairness in carer assessments across different regions is another necessary step. A standardized approach would help eliminate the postcode lottery effect, ensuring that all carers receive the same level of quality and support, regardless of where they live.
Focus on Action and Long-Term Support
Carer assessments should lead to tangible support and actionable steps. Regular follow-ups and adjustments to care plans as circumstances change are essential to provide continuous support. This approach would help carers feel that the assessment process is meaningful and beneficial, rather than a bureaucratic tick-box exercise.
Conclusion
Carer assessments are a crucial tool in supporting those who provide unpaid care for individuals with long-term health issues. However, the current system faces significant challenges that need to be addressed. By raising awareness, streamlining the process, improving training, implementing consistent standards, and focusing on actionable support, we can create a more effective and compassionate system that truly meets the needs of carers.
By addressing these issues, we can ensure that carers receive the support they need to continue their essential work without feeling overwhelmed, judged, or unsupported. Improving carer assessments is not just about meeting immediate needs but also about providing long-term, sustainable support that acknowledges and values the critical role carers play in our society.
Welcome to another blog post by Carer activist and author Matthew McKenzie, volunteer of Carers UK.
In this blog post you can learn why unpaid carers lack essential rights and how understanding and advocating for these rights can empower carers to improve their quality of life and protect those they care for. Discover the importance of lobbying, engaging with media, and participating in awareness campaigns to drive policy changes for unpaid carers.
To watch the indepth video lecture (44 minutes). Click to view the video below.
For this blog post, Matthew delves into the often-overlooked world of unpaid carers and explore why it’s crucial for them to understand their rights and well-being. As we approach Carers Rights Day 2024, it is a pertinent time to highlight the challenges faced by the millions of unpaid carers in the UK and other parts of the world. These individuals provide care for relatives, friends, or neighbors with long-term illnesses, and their role is indispensable yet challenging due to a lack of adequate rights and support.
The unpaid Carers’ Challenge
Financial Hardship
One of the most glaring issues for unpaid carers is financial support, or rather, the lack thereof. Unpaid carers, by definition, do not receive payment for their services, leading to significant financial strain. While some financial support is available through carers’ allowances, these are often insufficient and heavily scrutinized. Many carers find themselves embroiled in legal issues when claiming these benefits, exacerbating their financial insecurity.
Employment Rights and Flexibility
Despite the introduction of the Carers Leave Act 2024, which grants some rights to flexible working, much needs to be done. Employment protection and flexibility for carers are limited, with many facing harassment or pay cuts due to their caregiving responsibilities. The need for robust employment policies that safeguard carers’ rights is evident.
Lack of Respite Care
Respite care is crucial to prevent carer burnout, yet it has become increasingly scarce due to funding cuts. The high cost of respite care means that many carers, especially those not working, cannot afford it. Without adequate respite care, carers risk their mental and physical health deteriorating.
Health Care Access
The current healthcare system is predominantly patient-centered, often neglecting the health needs of carers. Unpaid carers face challenges in accessing healthcare for themselves, including regular check-ups and mental health support. Despite some protective measures, such as flu and COVID-19 vaccinations for carers, comprehensive health care access remains limited.
Social Inclusion and Isolation
Caring responsibilities often result in social isolation and exclusion from community activities, negatively impacting carers’ mental well-being. Though technology can offer some relief through virtual connectivity, it is not a panacea, particularly for those unable to afford it.
Legal Recognition and Support
The fact that caregiving is unpaid means that it often goes unrecognized legally. Services and the community may take carers for granted, providing little to no support and failing to inform them of their rights. Early intervention and legal recognition are crucial in ensuring carers receive the support they need.
Educational and Personal Development
Caring responsibilities can severely disrupt education for young carers and hinder personal development for adult carers. The lack of time and resources makes it difficult for carers to pursue educational or career opportunities, stalling their future prospects.
Mental Health Support
Mental health support for carers is critically inadequate, with many carers unaware of available resources or how to access them. Isolation, lack of social inclusion, and insufficient health care severely impact carers’ mental well-being.
Rights Carers Currently Have
Carers’ Assessment
Carers have the right to a carers’ assessment, which helps document their situation and needs. Although essential, many carers report that these assessments often result in little to no tangible support, making the process seem futile.
Carers’ Allowance
While carers’ allowance exists, it is fraught with issues, including restrictive eligibility criteria and the risk of punitive action against claimants. The allowance, as it stands, is minimal and controversial, insufficient to alleviate financial strain.
Rights to Flexible Working
The Carers Leave Act 2024 provides the right to flexible working, though it is limited and not uniformly enforced across the country. Advocacy for increased hours and broader implementation is necessary for meaningful support.
Rights to Respite Care
Carers have the right to respite care, though it is increasingly difficult to access due to high costs and stringent criteria. Ensuring carers can take breaks from their roles is vital to prevent burnout.
Protection from Discrimination
Carers are protected from discrimination, though many are unaware of this right. Discrimination in caregiving roles is vast and complex, and the lack of HR resources for carers makes it challenging to identify and address such issues.
Right to Information and Support Services
Carers have the right to information and support services, though access is limited by the inadequacy of trained staff and the lack of comprehensive dissemination of information.
Rights to Health and Well-being Support
Carers have the right to support for their own health and well-being, including check-ups and mental health services. However, these services are not readily accessible, and many carers are unaware of their rights to such support.
Educational Support for Young Carers
Young carers have the right to educational support, though accessing it remains a challenge. Ensuring that young carers can pursue their education without undue disruption is crucial for their development.
The Importance of Understanding Carers’ Rights
Understanding their rights can empower carers to advocate for themselves and the people they care for. Knowledge of their rights can improve their quality of life by ensuring they receive proper treatment, support services, and protection from discrimination. It enables carers to make informed decisions and seek legal advice when necessary.
Legal Protections and Support
Legal protections rooted in human rights principles, such as financial support and workplace regulations, are essential. Carers who understand these protections are better equipped to access available resources and advocate for their needs.
Reducing Social Isolation
Human rights principles emphasize social participation and inclusion, which are often limited for carers due to their responsibilities. Understanding these rights can help carers advocate for policies and support systems that promote inclusion and reduce social isolation.
Advocacy for Systematic Change
Aligning with human rights principles can help carers join larger advocacy movements, strengthening calls for systematic change. It can include campaigning for social safety nets, legal protections, and mental health support.
Lobbying for Carers’ Rights
Joining or Supporting Carer Organizations
Organizations like Carers UK and Carers Trust offer valuable resources and advocacy channels. They provide templates for contacting MPs and collect data through surveys to lobby for carers’ rights effectively.
Contacting Government Representatives
Carers can reach out to MPs and government officials to discuss the challenges they face and advocate for their rights. Being proactive is essential in ensuring carers’ issues are recognized and addressed.
Engaging with Media
Media engagement can amplify carers’ voices and raise public awareness about their rights and challenges. Participating in interviews, writing articles, and using social media platforms can draw attention to carers’ issues.
Participating in National Awareness Events
Events like Carers Week and Carers Rights Day offer opportunities to advocate for carers’ rights and raise awareness. Engaging in these events helps build a history of advocacy and increases focus on carers’ rights.
Utilizing Social Media
Social media platforms like Twitter, Facebook, and Instagram are powerful tools for raising awareness and advocating for carers’ rights. Sharing stories and engaging with advocacy organizations can help amplify carers’ voices.
Collecting and Sharing Testimonials
Sharing personal stories and experiences can highlight the wide range of issues faced by carers, making advocacy efforts more impactful. Initiatives like podcasts and video interviews can provide platforms for carers to share their stories.
Petitioning for Policy Changes
Petitioning for policy changes is a crucial step in advocating for carers’ rights. Signing petitions from organizations like Carers UK and Carers Trust helps build support for policy changes that benefit carers.
Conclusion
Empowering carers through knowledge of their rights is essential for their well-being and the well-being of those they care for. By advocating for their rights and participating in larger movements, carers can contribute to systematic changes that provide better support and recognition of their invaluable roles. As we approach Carers Rights Day 2024, let us remember the importance of supporting unpaid carers and ensuring their rights are respected and upheld.
A Caring Mind 