This week as of this blog post, the London Assembly published a major new report on unpaid carers: “London’s unpaid carers: Caring for the carers.”
I had the opportunity to contribute to this work as a carer and advocate, alongside others who shared their lived experience. Seeing those voices reflected in the final report is both encouraging and a reminder of how much still needs to change for unpaid carers in London.
One of the strongest messages in the report is that many unpaid carers are still not identified.
Too often, people caring for a partner, parent, or child don’t even realise they are classed as a “carer” which means they miss out on financial support, services, and basic recognition.
From my own experience, and what was shared at the Assembly, this is especially true for:
Mental health carers
Carers from ethnic minority backgrounds
Indentification of unpaid carers
If you’re not identified, I feel you don’t exist in the system.
Financial pressure is a major issue
The report possibly confirms what many carers already know:
Nearly 1 in 3 carers in London are living in poverty
Carer’s Allowance is not enough to live on
Many carers have to reduce work or leave employment entirely
There are positive recommendations here like reviewing Carer’s Allowance and reducing travel costs, but these need to turn into real change, not just policy discussions.
Support isn’t working as it should
Another issue raised in the report and something I spoke about is that support often feels like a “tick-box exercise”.
Carers go through assessments, but:
Support is limited
Funding is inconsistent
Real help (like respite care) is hard to access, especially for mental health carers, I mean what does respite actually mean for mental health unpaid carers?
Identification alone isn’t enough. I think It has to lead to meaningful, practical support.
So what needs to happen next?
The report makes some important recommendations:
Better identification of carers across London
More funding for local carer services
Changes to Carer’s Allowance
Improved workplace support
and a lot more, but you would have to go through the report.
But the key question now is: will this actually be implemented?
Carers don’t need more recognition alone we need action.
Final thoughts
Unpaid carers are holding up the health and social care system every single day.
This report is a very important step forward. But it should be the beginning of change not the end of the conversation.
If you are a carer, or know someone who is, I’d encourage you to read the report and share your experiences. The more visible carers are, the harder it is for the system to ignore us.
The March session of the National Ethnic Mental Health Carer Forum brought together carers, researchers, NHS professionals and community organisations for a conversation that felt both familiar and urgent.
Chaired by Matthew McKenzie, the forum stayed rooted in what it does best: creating a national grassroots space where lived experience meets systems, and where difficult truths are not avoided.
The agenda reflected that balance clearly:
10:35 – Professor Saffron Karlsen (University of Bristol)
11:20 – King’s College London (Phoebe Averill & team)
11:50 – Parliamentary and Health Service Ombudsman
12:00 – Thomas Ince – Universal Care Plan
Racism and Mental Health: Naming What We Already Know
Professor Saffron Karlsen opened the forum with a presentation that didn’t just describe inequality it explained how it is produced, sustained, and experienced in everyday life.
Drawing on over 30 years of research, Professor Saffron Karlsen is a sociologist at the University of Bristol whose research examines how racism and social inequality affect health, particularly within ethnic minority communities.
she spoke about racism not as a single act or incident, but as something woven into the fabric of society. It operates quietly and persistently, through institutions, through policies, through media narratives, and through the ways people interact with one another. The effect is cumulative. It builds over time, shaping not just opportunities, but health itself.
What made the presentation particularly powerful was how it connected these structural ideas to real human consequences. Racism was described as something that works on multiple levels at once: from overt abuse or violence, to the less visible but equally damaging experience of simply knowing that you live in a society where you may be treated unfairly. That awareness alone carrying the expectation of discrimination creates a constant undercurrent of stress and anxiety.
She explained how this stress doesn’t just sit in the mind. It translates into physical outcomes. People exposed to racism are more likely to experience anxiety, depression, and long-term distress, but also physical health inequalities such as cardiovascular disease. These outcomes are often misunderstood or misrepresented. Too frequently, they are explained away as lifestyle issues diet, exercise, personal choice without recognising the deeper social conditions that shape those behaviours in the first place.
A particularly striking part of the presentation focused on how people respond to these pressures. When individuals feel powerless to change their circumstances, they may turn to coping mechanisms smoking, drinking, or withdrawing from services. These responses are then judged in isolation, rather than understood as part of a wider context. In this way, the system not only fails to address the root causes but can end up reinforcing blame on the individual.
Perhaps the most important insight came when the discussion turned to healthcare itself. Even when services are available, they are not always experienced as safe or trustworthy. Saffron shared research showing that people may avoid seeking help not necessarily because of direct negative experiences, but because of what they have seen and heard about racism more broadly. The perception of risk becomes enough to keep people away.
One example described a woman who, during the COVID period, chose to avoid hospital care entirely. Her decision was shaped by what she had seen in public discourse and online reactions to racial justice movements. It left her feeling that she could not trust how she would be treated. This kind of anticipatory fear of not being treated with dignity or fairness adds another layer of stress to an already difficult situation.
The presentation also challenged the way healthcare systems understand illness. Many services still operate within a narrow biomedical framework, focusing on symptoms and diagnoses while overlooking the social realities that contribute to them. For people from marginalised communities, this can lead to experiences where their perspectives are dismissed or misunderstood. They may try to explain how racism, housing, poverty, or life circumstances have shaped their health, only to find those explanations sidelined.
This is where the concept of “epistemic injustice” becomes important, although Saffron didn’t dwell on jargon, the meaning was clear. It is about whose knowledge counts. When patients and carers are not listened to, or when their experiences are not taken seriously, care becomes something done to them, rather than with them. For many, this is not just frustrating it is re-traumatising.
Professor Saffron also showed a video – Nilaari delivering hope A community mental health provider for people of colour, which you can watch below.
1. “You’ve explained the problems, but what are the solutions?”
Answer: Saffron acknowledged that addressing racism at its root is complex and long-term, but highlighted practical steps:
Services must be co-produced with people who have lived experience
Communities need to be actively involved in decision-making spaces
Grassroots and voluntary organisations should be:
properly funded
meaningfully included in policy and service design
She emphasised that change should be done with communities, not to them, and that learning from effective third-sector approaches is key.
2. “Do you look at drug and alcohol use as part of racism-related issues?”
Answer: Yes, but not in the way systems often frame it.
Saffron explained that:
Substance use is often a response to difficult life experiences, including racism and poverty
Systems tend to treat it as an individual problem, rather than understanding the wider causes
These behaviours can reflect a lack of:
support
options
alternative coping mechanisms
She stressed the importance of shifting away from blame and towards understanding context.
3. “Is trauma-informed care part of the solution?”
Answer: Trauma-informed care is important, but not sufficient on its own.
Saffron highlighted that:
Current models of trauma-informed care can be too narrow
They often fail to fully account for:
systemic racism
structural inequalities
Services also need to recognise that they themselves can contribute to trauma
She suggested that trauma-informed approaches must be:
culturally sensitive
shaped by different communities’ understandings of trauma
4. “What do you mean by ‘racism is a virus’?”
Answer: Saffron used this idea as a metaphor.
She explained that:
Racism spreads and reproduces across society, much like a virus
It moves through:
institutions
policies
social interactions
It grows and reinforces itself over time
At the same time, she used this idea to challenge overly individualised thinking—highlighting that racism is structural, not just personal.
King’s College London: When Crisis Care Comes Too Late presented by Phoebe Averill.
After the earlier discussion on racism and inequality, the presentation from King’s College London brought the conversation into something more immediate what actually happens when someone reaches crisis point and needs urgent mental health support.
Phoebe Averill and her team focused on pathways under the Mental Health Act, but what emerged wasn’t a technical discussion. It was a picture of a system that often struggles at the exact moment it is supposed to respond.
They began by looking at the period just before crisis. In many cases, there are early warning signs. Carers and families notice changes subtle at first, then more obvious. They often try to raise concerns early, hoping intervention might prevent things from escalating. But too often, those early signals are not acted on.
By the time the system responds, the situation has already deteriorated.
The research highlighted that delays are not caused by a single issue, but by a combination of pressures within the system. These include:
shortages in hospital beds
fragmented coordination between services
breakdowns in communication across teams
While these explanations are familiar, the impact of them feels anything but routine. During the waiting period, people do not remain stable. They become more unwell, more distressed, and more at risk. What could have been addressed earlier becomes a crisis that is harder to manage.
One of the most striking parts of the presentation was the focus on what happens in that gap between “something is wrong” and “help arrives.” That space is where much of the pressure shifts onto carers.
Carers described being left to manage situations that are escalating in real time. They are expected to keep someone safe, to monitor behaviour, and to absorb the emotional weight of what is happening all while waiting for services to respond. In some cases, this can last days or even weeks.
This isn’t a formal role, and it’s not one carers are prepared for. It’s something they step into because there is no alternative.
The consequences of these delays don’t end when care finally arrives. By that point, the impact can already be significant. The research pointed to outcomes such as:
worsening mental health leading to longer hospital stays
increased risk of avoidable harm during the waiting period
disruption to housing, employment, and relationships
In other words, the delay itself becomes part of the problem, shaping what happens next.
Another important thread running through the presentation was the role of carers’ knowledge. Carers are often the first to recognise when something is changing. They understand patterns, triggers, and early warning signs in a way that professionals may not see immediately. Yet this insight is not always taken seriously or acted upon.
The result is a system that tends to respond late rather than early intervening at crisis point, rather than preventing it.
The KCL team were clear that their research is trying to address this gap. They spoke about building a lived experience advisory group and involving carers and service users directly in shaping the work. There was a clear intention to move beyond observation and towards something more collaborative, where lived experience informs how the research develops.
At the same time, there was a quiet recognition in the room that much of this is not new. Similar issues have been raised repeatedly over the years. The difference here was not the discovery of the problem, but the clarity of where it sits in that critical moment where response is needed, and the system is slow to act.
Placed alongside the earlier discussion on racism, this presentation added another layer of understanding. It showed how broader inequalities are not abstract—they play out in very real ways at the point of crisis. Where trust is already fragile, delays make it harder to engage. Where carers are already stretched, the system’s response can increase that pressure rather than relieve it.
By the end of the session, one idea stood out clearly: this is not just about whether care is available. It is about whether it comes at the right time, whether the right people are listened to, and whether the system is able to act before situations reach breaking point.
Parliamentary and Health Service Ombudsman: When Accountability Feels Out of Reach
The next presentation of the forum came from the Parliamentary and Health Service Ombudsman team, who joined to explain how carers and families can raise concerns when NHS care goes wrong.
On the surface, this was a session about process how complaints move through the system and when the Ombudsman becomes involved. But as the discussion unfolded, it became clear that this was really about something deeper: whether accountability is genuinely accessible to carers in practice.
The team described their role as an independent body that steps in once local complaints processes have been completed. In theory, the pathway is clear. Before approaching the Ombudsman, people are expected to go through several stages:
raise concerns with the service directly
receive a formal response, often referred to as the “final response letter”
only then escalate the complaint for independent review
What sounds straightforward on paper quickly became more complex when viewed through lived experience.
Carers shared how difficult it can be to even reach that final stage. The process can take months, sometimes longer, and often requires sustained effort just to keep it moving. Following up, chasing responses, and navigating unclear communication becomes part of the experience.
One comment in the chat captured this reality clearly:
“It can be hard to get to the point of getting a final outcome letter… the amount of advocacy and chasing that needs to happen…”
Another highlighted how far removed the process can feel from everyday awareness:
“It takes far more than 12 months to even come into awareness…”
In response, the Ombudsman team acknowledged that delays particularly at the final response stage are common. They explained that in some cases, where delays are extreme, they may contact organisations directly, and they encouraged people to use their helpline for guidance when processes stall.
But even with that support, there was a sense in the room that the system places a significant burden on those trying to access it. By the time someone considers making a complaint, they are often already dealing with the aftermath of a difficult experience. Adding a lengthy and sometimes frustrating process on top of that can feel overwhelming.
The conversation also turned to accessibility. Questions were raised about language, digital access, and the assumptions built into how information is shared. Not everyone engages with systems in the same way, and not everyone finds it easy to navigate written guidance or formal processes.
Participants pointed out that some communities may never reach the complaints stage at all—not because issues don’t exist, but because the pathway itself is difficult to access.
This was reflected in a simple but powerful comment:
“We are assuming that everyone reads…”
There were also wider reflections about how systems could better meet people where they are, including:
making information available in more accessible formats and languages
reaching people through community networks, not just formal channels
Even within this practical discussion, the themes from earlier in the forum remained present. Trust, accessibility, and lived experience all shaped how people understood the complaints process.
Placed alongside the earlier presentations, this session added an important dimension. If the system fails as described in the discussions on racism and crisis care—then the ability to challenge that failure becomes critical. But if the route to accountability is difficult to navigate, many experiences may never be formally recognised.
What emerged was not a rejection of the Ombudsman’s role, but a recognition of the gap between what exists and what is accessible.
Because accountability is not just about having a process in place. It is about whether people can realistically use it especially at a time when they may already be stretched, exhausted, and navigating multiple pressures.
Universal Care Plan and Carer Contingency Planning: A System Trying to Catch Up
The final contribution to the forum came from Thomas Ince, introducing the Universal Care Plan often referred to as UCP. After the earlier discussions on racism, crisis care, and accountability, this felt like a shift towards something more practical: what the system is trying to build in response to the gaps carers have been describing.
At its core, the Universal Care Plan is a digital tool designed to allow people to record and share information about their care. It sits within the NHS App and is intended to bring together health, social care, and voluntary services around a shared understanding of a person’s needs and preferences.
Thomas described how the system has evolved over time. It began with a focus on end-of-life care, making sure that a person’s wishes could be accessed quickly by professionals such as ambulance crews. It then expanded into areas like sickle cell crisis planning and is now being extended further to cover a wider range of conditions and situations.
The direction of travel is clear: moving from a professionally controlled system towards something more person-owned, where individuals can enter their own information and shape how their care is understood.
A Tool That Centres “What Matters to You”
One of the key features Thomas highlighted was a section within the plan that allows people to describe themselves in their own words. Rather than being defined only by diagnosis or clinical notes, individuals can record what matters to them information that can then be seen by anyone involved in their care.
In principle, this is a shift towards more personalised and human-centred care. It offers a way to capture context, preferences, and lived experience in a system that often reduces people to categories.
But for this forum, the most significant element was something more specific.
The Carer Contingency Plan
Thomas introduced a feature that immediately resonated with the group: the carer contingency plan.
This allows carers to record what should happen if they are suddenly unable to provide care. For example:
if they become unwell or need urgent medical attention
if there is a sudden change in their circumstances
In those situations, the system can alert professionals to the fact that someone is dependent on that carer and provide information about what support is needed.
For many carers, this addressed a very real and often unspoken concern: what happens to the person they care for if something happens to them?
The idea that this information could be visible across services—rather than held informally or not at all felt like a meaningful step.
From Concept to Reality: The Challenge of Engagement
While the tool itself was broadly welcomed, the discussion quickly moved beyond what it does to how it will actually be used.
Thomas was open about the current stage of development. Although the system is available, it remains largely driven by professionals, with limited public awareness. One of the key aims now is to shift towards wider engagement encouraging people to take ownership of their care plans and input their own information.
This raised an important question in the room: how do you introduce a digital solution into communities where trust in services is already fragile?
Participants pointed out that many people particularly from ethnic minority backgrounds—do not engage easily with primary care systems. If the entry point to the Universal Care Plan is through those same systems, there is a risk that the people who could benefit most may not use it at all.
Suggestions began to emerge organically from the group, reflecting a more community-led approach:
working through carer centres, peer groups, and local networks
engaging cultural organisations and community leaders
using spaces where trust already exists, rather than relying solely on formal channels
There was a clear sense that communication could not be an afterthought. It needed to be built into the design of how the tool is introduced.
Language and Accessibility: A Tension Exposed
One of the most striking moments in this section came when language accessibility was discussed.
At present, the NHS App and therefore the Universal Care Plan is only available in English (and Welsh). Thomas acknowledged that this is a limitation and that while there are conversations about future solutions, no immediate changes are in place.
This prompted a strong reaction from participants. There was frustration that a tool described as “universal” could exclude large sections of the population from the outset. For some, this was not just a technical issue but a reflection of a wider pattern—systems being designed without fully considering the diversity of the communities they serve.
It brought the discussion back to a familiar theme from earlier in the forum: inclusion cannot be added later, it has to be built in from the beginning.
A Step Forward With Conditions
Despite these concerns, there was recognition that the Universal Care Plan has real potential.
The idea of having:
shared, accessible information across services
visibility of carers and their responsibilities
a contingency plan that reduces risk in emergencies
addresses issues that carers have been raising for years.
But the conversation made it clear that the success of the tool will depend on more than its functionality. It will depend on whether people:
know about it
trust it
can access it
and feel that it reflects their needs and realities
Without that, there is a risk that it becomes another well-intentioned solution that doesn’t reach the people it was designed for.
Placing It in the Wider Conversation
Coming at the end of the forum, this presentation connected in an important way to everything that had been discussed earlier.
Where Saffron’s presentation explored the structural roots of inequality, and the KCL research showed how system delays affect people in crisis, the Universal Care Plan represented an attempt however early to respond to those issues in practice.
But it also revealed the ongoing challenge.
Because even when new tools are introduced, they are still shaped by the same system dynamics: questions of trust, access, communication, and inclusion do not disappear they simply take new forms.
March 21 marks the International Day for the Elimination of Racial Discrimination, which is a day recognised across the world to remember, reflect, and take action.
This day was established following the tragic events of the Sharpeville Massacre in South Africa in 1960, where peaceful protestors lost their lives while standing against injustice. It is a reminder of how far we have come, but also how far we still need to go.
Racism is not just something we read about in history. It continues to exist in our societies, often in ways that are subtle, systemic, and deeply embedded. It can affect people’s opportunities, their confidence, and their sense of belonging.
As a carer activist, I see the impact of this in mental health and support systems. When people feel unheard, misunderstood, or treated unfairly, it can have lasting effects on their wellbeing. Care should be equal, compassionate, and inclusive for everyone.
This day is not only about raising awareness, but about encouraging action. Each of us has a role to play in challenging discrimination and promoting understanding.
That might mean listening more carefully to others’ experiences, educating ourselves, speaking up when something isn’t right, or simply showing empathy in our everyday interactions.
Change doesn’t always come from big gestures. It often starts with small, consistent actions.
March 21 is a reminder, but I think the responsibility is ongoing.
The question is: what will you do to stand against racism?
If you’re a Black unpaid carer, you already know what it means to carry a lot responsibility, love, pressure, and often, silence. Whether you’re supporting a parent, partner, child, or friend, your role is vital. But too often, carers are left out of conversations about mental health, support systems, and services that are meant to help.
That’s why the upcoming Black Mental Health: Early Access, Prevention & Culturally Safe Pathways Conference is worth your attention.
This isn’t just another event. It’s a space designed with our communities in mind, where lived experiences are recognised, cultural understanding is centred, and real conversations can happen.
Why attend if you are a Black unpaid carers
Many Black carers face unique challenges:
Navigating services that don’t always understand cultural context
Experiencing stigma around mental health within families or communities
Feeling isolated, overwhelmed, or unsupported
Struggling to find information that reflects their reality
This conference creates a rare opportunity to step into a space where those experiences are not only acknowledged but taken seriously.
What you can expect
This event brings together professionals, community leaders, and people with lived experience to explore how we can improve access to mental health support and create safer, more inclusive pathways.
You’ll find:
Open conversations about care, connection, and change
Guest speakers sharing insight, expertise, and lived experience
Practical information on accessing support earlier and more effectively
A community atmosphere where you can meet others who understand your journey
There will also be food, a marketplace, and informal opportunities to connect—because sometimes the most powerful support comes from simply not feeling alone.
Why your voice matters
As an unpaid carer, your perspective is essential. Systems can’t improve without hearing directly from those who are navigating them every day.
Attending this conference is not just about receiving information it’s about:
Sharing your experiences
Influencing future services
Building connections with others in similar roles
Finding new ways to support both yourself and the person you care for
Taking a moment for yourself
Carers are often the last to prioritise their own wellbeing. This event is a chance to pause, reflect, and invest in your own mental health without guilt.
You deserve support. You deserve to be heard. And you deserve spaces that understand you.
Today is Young Carers Action Day, a time to recognise the incredible strength and resilience of young people who care for others.
As someone who cared for my brother who has autism while growing up, I understand how caring can shape a young person’s life. It can build compassion and responsibility, but it can also bring challenges that many people don’t see especially when it comes to balancing school, friendships, and your own mental wellbeing.
To see my video promoting Young Carers Action day 2026, please view below.
This year’s theme, Fair Futures for Young Carers, is an important reminder that young carers deserve the same opportunities as everyone else to learn, to thrive, and to look after their own wellbeing too.
Young carers should never feel invisible. They deserve recognition, understanding, and the right support in their schools, communities, and workplaces.
Today as of this blog and video, I encourage everyone to take a moment to learn about young carers, listen to their stories, and help create a future where every young carer feels seen, supported, and valued.
Young carers across the UK continue to receive growing recognition and support from organisations, communities and government. For example, Carers Trust leads Young Carers Action Day, encouraging schools, employers and communities to ensure young carers have fair opportunities. Local authorities such as Royal Borough of Greenwich have also highlighted their commitment to supporting young carers through local services and awareness campaigns. Media outlets like BBC Newsround have helped raise awareness among young audiences by sharing stories about the experiences of young carers. In addition, initiatives such as Going Forward into Employment (GFIE) highlight wider efforts to create opportunities for carers and under-represented groups.
It is also important that support reaches ethnic minority carers, who can sometimes face additional barriers such as cultural stigma, language barriers, or limited access to services. Organisations such as Carers UK and community groups working with Black, Asian and minority ethnic carers continue to call for more inclusive and culturally sensitive support.
I feel Unpaid carers play a vital role in supporting loved ones experiencing mental health challenges. Much of this caring happens quietly in homes, during sleepless nights, through appointments, advocacy, and everyday acts of protection and support.
For many carers from minority communities, this experiences also includes navigating the cultural understanding, language differences, and systems that sometimes do not always recognise or reflect communities. Despite the knowledge carers hold, I feel our voices can sometimes feel overlooked in those decisions about care.
I recently wrote and recorded a short spoken word poem titled “Nothing About Us Without Us.” This poem reflects a simple and important message: carers bring lived experience that should be included in conversations about mental health services.
The poem is taken from the book I am developing called “Unpaid, Unseen and Yet Unbroken”
Carers are not just supporters in the background. Carers can carry knowledge shaped by lived reality by caring, advocating, and supporting our families through complex systems.
The poem also speaks to the importance of co-production. When carers, communities, and professionals work together, services can become more understanding and culturally responsive, and equitable.
I think this message is especially relevant to ongoing work around the Patient and Carer Race Equality Framework (PCREF), which encourages meaningful involvement of people with lived experience in shaping mental health services.
The poem is a small creative contribution to that conversation. It invites us to reflect on a few simple questions:
Are carers from different backgrounds being listened to?
Are those lived experiences shaping services?
Are decisions being made with carers, not about them?
Listening to carers is not just a gesture of inclusion it can lead to better understanding, stronger partnerships, and better care.
If you would like to watch the poem, you can find the video here:
I hope my poem encourages reflection and conversation about how we can continue building services with communities, and not just for them.
Chairing the recent Greenwich Mental Health Carers Forum reminded me yet again why these spaces are essential. This is because carers are carrying enormous pressure, often quietly, and if we don’t create structured spaces for them to speak, the system will simply move on without them.
I opened the forum by introducing myself through a lot of organisations via activism. I reminded everyone that while this is a Greenwich forum, it connects to national networks. The issues we raise locally are part of much bigger structural conversations.
But before policy, before strategy, before campaigning, we always start with lived experience.
When Carers Are Left Without Safety Nets
One carer shared something that should concern all of us: their mental health medication had been abruptly stopped pending a review. No advance warning. No contingency. No safeguarding plan despite them being a full-time carer and working as well.
That situation highlights a critical flaw in our systems: carers are often treated as separate from the care infrastructure, even when their own stability directly affects the person they support.
When a carer’s health is destabilised, the entire care structure is destabilised.
We discussed practical escalation routes suh as contacting care coordinators, speaking to mental health nurses at GP practices, ensuring issues are documented. But the bigger question remains: why do carers have to fight for continuity in the first place?
National Issues Carers Need to Be Aware Of
A significant part of the forum was focused on national developments. If carers don’t understand the wider policy landscape, it becomes harder to challenge decisions locally.
Carer’s Allowance and the Overpayment Scandal
Organisations like Carers UK continue to highlight two major issues:
Carer’s Allowance remains one of the lowest benefits of its kind.
The overpayment recovery system has been excessively punitive due to automated earnings thresholds.
The “cliff edge” earnings rule forces working carers to limit hours to avoid losing their allowance entirely. That is not a supportive system — that is a trap.
The Missing National Carers Strategy
The last national carers strategy was published in 2018. Since then, there has been no overarching cross-departmental framework.
That absence creates gaps between:
Department of Health and Social Care
Department for Work and Pensions
NHS England
Without coordination, carers fall between systems.
Groups such as Carers Trust and Age UK continue to push for renewed oversight, but until there is political will, carers remain structurally vulnerable.
NHS Pressures and Workforce Gaps
Research from The King’s Fund and Nuffield Trust continues to highlight workforce shortages and structural underfunding.
Carers feel this directly:
Delayed appointments
Limited respite
Reduced community follow-up
Poor continuity of care
When the NHS workforce is stretched, carers absorb the overflow.
The Economic Value of Carers
Unpaid carers save the country an estimated £160 billion annually effectively the equivalent of running a second NHS.
And yet, carers are still asked to “do more with less.”
That contradiction must be challenged.
Digital Transformation and AI in Healthcare
We also discussed the NHS push toward digitisation and artificial intelligence. Carers UK recently circulated consultation material on AI in healthcare.
Digital transformation can bring opportunities, but we must ask:
Are carers being consulted?
What about digital exclusion?
How will AI decision-making impact safeguarding?
Carers must not be the last to know when services change.
Mental Health Act Reform – A Major Change
The Mental Health Act has now received Royal Assent. One of the most significant changes concerns the introduction of a “nominated person.”
While intended to strengthen patient autonomy, it may in some circumstances sideline primary carers if relationships are strained or confidentiality is invoked.
This has serious implications:
Access to information
Involvement in care planning
Safeguarding
We will be inviting Mental Health Act leads to discuss this further. Carers need clarity before implementation impacts them.
Why I Continue to Chair These Forums
Some may wonder why I continue to run multiple carers forums local and national.
The answer is simple.
Because carers are often spoken about, but not spoken with.
If we do not build organised, informed, connected carer communities, systems will continue operating without meaningful accountability.
Every forum is an opportunity to:
Share escalation routes
Connect carers to national advocacy
Surface systemic gaps
Build confidence
Strengthen collective voice
Greenwich carers deserve to be informed, protected, and empowered, not reactive and firefighting.
As always, I will blog the full national updates separately so carers can reference them. The forum is not just a discussion space it is part of a wider campaign for recognition, reform, and respect.
The National Ethnic Mental Health Carer Forum is a grassroots group that focuses on addressing the unique challenges ethnic minority carers face in the mental health care system. The forum brings together carers, professionals, and organizations to engage in discussions, share experiences, and advocate for the inclusion of carers’ voices, especially those from minority backgrounds, in mental health policy and practice.
The forum acknowledges the significant role carers play in supporting individuals with mental health issues, especially from ethnic minority communities. It also highlights the issues of systemic and structural racism within the mental health care system and how these issues affect not only patients but also their carers.
I began the discussion by focusing on the importance of anti-racism in the mental health care system, especially as it pertains to ethnic minority carers. I explained that the forum’s main aim was to address the challenges faced by ethnic minority carers in mental health, emphasizing how systemic racism continues to affect these carers and their loved ones.
I highlighted the following key points:
Racism as a Structural Issue:
Racism in mental health care is not just about individual prejudice, but it is deeply embedded in the structure of the system. This includes policies and practices that disproportionately affect ethnic minority communities.
I pointed out that ethnic minority carers face unique challenges in navigating the mental health care system, including being excluded from important discussions about their loved ones’ care. I stressed that carers those who know the patients best often feel their voices are undervalued or completely ignored by mental health professionals.
Racial inequalities manifest in various ways, from higher rates of detention under the Mental Health Act to the overuse of restraint and coercive care practices. These practices disproportionately affect ethnic minority communities, and the role of carers is often marginalized in these processes.
Importance of Carers’ Voices:
I made it clear that carers’ voices must be heard when it comes to anti-racism efforts in mental health services. Carers have the ability to provide crucial context about their loved ones’ needs, especially cultural needs, that clinicians may overlook or misinterpret.
It was crucial to stress that carers are not just supporters of the patient; they are knowledge holders with unique insights into the patient’s condition, behaviors, and needs. Without including them, mental health services risk misunderstanding cultural expressions of distress, leading to misdiagnosis or inappropriate treatment.
Requests for Future Presentations from Prof. Subodh Dave and Ruth:
Greater Focus on Mental Health Policy Reforms:
Attendees requested further discussions on the mental health policy reforms and the steps being taken to ensure that these changes address racial disparities. They expressed interest in hearing more about the impact of recent changes and how policy could be further improved to support ethnic minority communities.
Practical Examples of Anti-Racism Initiatives:
Participants asked for real-world examples of anti-racism initiatives being implemented within mental health services. They wanted to hear about successful case studies where changes have been made and how those changes have positively impacted carers and patients.
Integration of Carers in Mental Health Decision-Making:
There was a strong interest in exploring how carers can be better integrated into decision-making processes at a systemic level. Attendees wanted Prof. Dave and Ruth to discuss strategies to ensure that carers are not just involved in individual care but are included in the larger policy decisions that shape mental health services.
Cultural Competency Training for Professionals:
Attendees suggested that cultural competency training should be a central focus in future discussions. They wanted to understand how mental health professionals are being trained to understand the unique cultural contexts of ethnic minority communities and how this is being addressed through institutional change.
Long-term Strategy for Addressing Racial Disparities:
Attendees requested a long-term strategy for addressing racial disparities in mental health services. They were particularly interested in future initiatives, including how diversity in the workforce and access to care for ethnic minority communities would evolve over time.
Questions Asked During the Discussion:
How can we ensure that mental health professionals take racial disparities seriously?
What role can ethnic minority carers play in tackling systemic racism in mental health services?
What are the next steps in ensuring that ethnic minority carers are involved in mental health policy at every level?
Can you discuss the intersection of race and mental health legislation and how it specifically affects ethnic minority carers?
How can cultural competency training be integrated into everyday practice for mental health professionals?
Presentation by Dr. Patrick Nyikavaranda: Policy, Equity & Carer Engagement
Next up to speak was Dr. Patrick Nyikavaranda is a Senior Research Fellow and the Public Involvement and Engagement Lead at the NIHR Mental Health Policy Research Unit within the Division of Psychiatry at University College London (UCL). His work focuses on improving mental health policy through research that aims to address equity and inclusion in mental health services.
Dr. Nyikavaranda has a strong commitment to engaging carers and patients with lived experience in the research process, ensuring that their voices are central to shaping mental health care policies and creating more equitable services. He is particularly focused on addressing the systemic racial disparities in mental health care and promoting cultural competence among mental health professionals.
Key Points from Dr. Nyikavaranda’s Presentation:
Overview of the Policy Research Unit:
Dr. Nyikavaranda explained the work of the Policy Research Unit in Mental Health, which is focused on generating evidence to influence mental health policy and improve mental health services.
The unit works with a range of stakeholders, including carers, to produce evidence that informs the development of policy aimed at addressing racial disparities and improving care for ethnic minority communities in the mental health system.
Carer Engagement:
A central theme of Dr. Nyikavaranda’s presentation was the importance of involving carers in mental health research and policy. He emphasized that carers are essential partners in the mental health care process and their insights and lived experiences are crucial in shaping equitable services.
Carers’ lived experiences offer unique perspectives on the challenges faced by patients, especially those from ethnic minority backgrounds, and their input is invaluable in creating policies that are more inclusive and culturally competent.
Addressing Equity in Research and Policy:
Dr. Nyikavaranda spoke about the persistent inequities in mental health services, particularly for ethnic minority patients. He discussed the importance of research that focuses on equity, specifically how racial disparities impact access to services, diagnosis, treatment, and outcomes.
He highlighted the need for inclusive research that represents the voices of carers, especially those from underrepresented communities. Engaging carers in the research process ensures that the evidence produced reflects the real-world needs of patients and carers.
After Dr. Nyikavaranda’s presentation, the session continued with a discussion and Q&A where forum participants had the opportunity to ask questions and provide reflections on the topic of policy, equity, and carer engagement in mental health.
Updates from Norfolk and Suffolk Foundation Trust
During the forum representatives from Norfolk and Suffolk Foundation Trust (NSFT), provided updates on the progress made in involving carers, particularly those from ethnic minority backgrounds, in improving mental health services and addressing racial disparities.
The key updates from Norfolk and Suffolk Foundation Trust were as follows:
Carer Engagement:
Norfolk and Suffolk Foundation Trust has made significant strides in engaging carers in the mental health care process. They have created platforms that allow carers to voice their experiences and contribute to the care planning of their loved ones. This is part of a broader effort to embed carers’ perspectives in all levels of service delivery.
The Trust has developed a Carers Charter, which is based on the Triangle of Care framework, ensuring that carers are recognized as equal partners in the care process. This Charter outlines the six key standards for improving the quality of care, including the involvement of carers and recognition of their expertise.
Cultural Sensitivity and Support:
The Trust is working to ensure that mental health services are culturally sensitive and cater to the needs of ethnic minority communities. There is a focus on improving communication between health professionals and carers, particularly in regards to understanding the cultural needs of ethnic minority patients.
The Trust is looking to enhance its support for carers, particularly those from diverse backgrounds, by offering tailored resources and support structures. They are also aiming to create more inclusive spaces for carers to come together and share their experiences and challenges.
Co-Production with Carers:
Norfolk and Suffolk Foundation Trust is adopting a co-production approach, meaning that they are working collaboratively with carers and service users to design and deliver services. This approach allows carers to be actively involved in shaping policies, procedures, and the overall care framework.
Commitment to Tackling Racial Disparities:
The Trust is also committed to tackling racial inequalities in mental health care. They are working to ensure that ethnic minority patients and their carers have access to equitable services. This includes addressing issues such as disproportionate detention rates, increased use of restraint, and the underrepresentation of ethnic minorities in mental health research.
Feedback and Reflection:
Attendees were encouraged to provide feedback on the Trust’s progress, particularly on how well they felt carer voices are being integrated into mental health services. Jodie and Annie invited participants to share their thoughts and experiences to further improve services and strengthen the carer-professional relationship.
This section of the forum underscored the importance of collaborative engagement between mental health services and carers. The updates from Norfolk and Suffolk Foundation Trust highlighted how a carer-centered approach, especially one that includes the voices of ethnic minority carers, can lead to more inclusive, effective, and culturally competent care.
The next presentation was focused on Ethnic Carers and Poetry, with an emphasis on how poetry can be used as a form of expression for ethnic minority carers in mental health. The session was led by Matthew McKenzie, the facilitator of the forum.
Presentation: Ethnic Carers and Poetry
Presenter: Matthew McKenzie
In this presentation, I explored the therapeutic value of poetry in expressing the lived experiences of ethnic minority carers. I emphasized how poetry can serve as a tool to communicate the emotional burden, grief, and frustration that carers often face in mental health settings, particularly when dealing with the added complexities of racism and systemic barriers.
Key Points Covered:
Poetry as a Voice for the Unheard:
I discussed how ethnic minority carers, often feeling invisible within the mental health system, can use poetry to reclaim their voice and assert their lived experiences. Poetry provides a unique space for expression, where carers can share their struggles, advocate for their loved ones, and address the challenges they face in a system that may not always recognize their needs or contributions.
Cultural Expression through Poetry:
Poetry also allows carers to engage with their cultural heritage. For many ethnic minority carers, it serves as a means to reconnect with their traditions, cultural identity, and community. I emphasized that this form of expression can be a powerful way to resist silence and challenge marginalization within both the mental health system and society at large.
A Call for Carers to Share Their Stories:
I presented how important it is for carers to share their own experiences through poetry, noting that their personal stories could be transformative not just for them, but for others who face similar struggles. The opportunity to contribute their voices to the forum’s upcoming poetry collection titled “Unpaid, Unseen, Yet Unbroken” was presented as a way for carers to gain recognition and contribute to the ongoing dialogue on mental health and anti-racism.
Poetry as Protest and Healing:
Poetry was described as not just a form of personal expression, but also a form of protest against the invisibility and marginalization that ethnic minority carers often face in the mental health system. It was highlighted as a means to challenge institutionalized racism and raise awareness about the specific barriers faced by carers from ethnic minority backgrounds.
Invitation for Future Submissions:
As part of an ongoing initiative, I encouraged carers to submit their poems for inclusion in the collection. The goal was to amplify their voices, giving them an opportunity to be heard and to showcase the power of cultural expression in advocating for change.
This presentation marked an important moment in the forum, as it not only provided a space for reflection and emotional expression but also offered carers a creative outlet for advocacy and empowerment. By using poetry, carers could challenge the norms, raise awareness about the struggles they face, and ultimately drive systemic change within the mental health system.
On 25th February 2026, I had the privilege of speaking at the Carers’ Forum hosted by Involve Kent.
Involve is a voluntary sector infrastructure organisation in Kent that supports unpaid carers by providing information, advice and practical help to make caring more manageable.
They organise regular carers’ forums and events where carers can meet each other, access specialist support services, hear from guest speakers on issues like benefits, legal rights and wellbeing, and contribute their lived experience to local planning and decision-making. Involve also connects carers with tailored resources, signposts to relevant services across health, social care and community sectors, and advocates for carers’ voices to be heard by policymakers and service providers
The forum ran from 10:30am to 1:30pm and brought together unpaid carers from across Kent to connect, learn and have their voices heard.
It was my second time speaking at this forum, and once again I was struck by something powerful: the room was full. That might sound simple, but in the world of unpaid caring which can often feel isolating and invisible a full room means solidarity. It means people are choosing, despite exhaustion and competing demands, to show up for themselves and each other.
Arriving and the atmosphere
From the moment I walked in, there was a real sense of warmth. Information stands lined the hall Involve, Citizens Advice, mental health services, energy advice, leisure services and more. Tables were covered in leaflets, conversations were already flowing, and carers were reconnecting with familiar faces.
The purpose of the forum was clear:
To enable those caring unpaid for an adult family member, partner or friend to meet, gain information about services in their community and have their voices heard .
That last part to have their voices heard is what resonated most with me.
It was also good to see Carer leads from Cygnet Maidstone engaging with carers in the community of Kent.
My talk: Caring for someone with a mental health diagnosis
I spoke about caring for someone with a mental health diagnosis and the Patient and Carer Race Equality Framework .
As many know, I cared for my mother who lived with schizophrenia, and I now support a close friend who lives with personality disorder and addiction challenges. I don’t speak as a clinician. I spoke as someone who has sat in GP waiting rooms, on inpatient wards, in crisis meetings, and at home during those “screaming silences” that carers know too well.
I shared:
The confusion I felt when I didn’t even realise I was a “carer”
The frustration of confidentiality barriers
The loneliness of not being listened to
The emotional exhaustion that comes from constantly firefighting crises
I then shared a poem to promote carers rights
But I also shared something equally important: growth, advocacy and solidarity.
I encouraged carers to:
Educate themselves about the condition they are supporting
Learn the difference between symptoms and personality
Understand triggers
Forgive themselves for mistakes
And most importantly, look after their own wellbeing
One message I always return to was – You cannot pour from an empty cup.
I also spoke about The Patient Carer Race Equality Framework
It exists because there is clear evidence of:
Disproportionate detentions under the Mental Health Act
Poorer outcomes for Black and minority ethnic patients
Higher levels of distrust between communities and services
Carers feeling unheard or excluded
I spoke about how minority carers can face:
Cultural misunderstandings
Language barriers
Stigma around mental health within communities
Fear of services due to past discrimination
A lack of culturally appropriate support
Discussion tables: Carers influencing change
After my talk, Clara from Involve led discussions feeding into Kent’s Health Needs Assessment for carers. Carers were asked:
How do you recognise when it’s time to ask for help?
What causes burnout?
What would a carer-friendly community look like?
These wete not token questions. Staff took notes (without identifying details) so carers’ lived experiences could directly inform local planning .
I moved around the room speaking with carers. Some were open and vocal. Others were quieter, but their listening was just as powerful. Not everyone wants to speak publicly and that’s okay. Being present is also participation too.
Power of Attorney – protecting your voice
Later in the morning, Glen Miles spoke about the Mental Capacity Act and Lasting Power of Attorney .
As carers, we often assume we will automatically be consulted in crises. The reality is different. Without legal authority, our ability to advocate can be limited.
One key takeaway:
Don’t delay in arranging Lasting Powers of Attorney.
If you want your voice – or your loved one’s voice – to be heard, formalise it.
For carers who have experienced being excluded from decisions, this was a particularly important session.
Citizens Advice & practical support
Ian from Citizens Advice spoke before lunch about benefits, debt, housing and confidential support .
With the cost of living crisis, carers are under immense financial pressure. Many reduce employment hours or leave work entirely. The session was a reminder that:
Advice is free
It is confidential
You can attend anonymously
You are not judged
Lunch followed – catered by Fusion – and honestly, some of the most meaningful conversations happen over sandwiches. Carers swapping stories. Sharing phone numbers. Recommending services. That peer-to-peer support is priceless.
What stayed with me
What stayed with me most wasn’t just the agenda or the presentations.
It was:
The older carer quietly nodding as I spoke about emotional exhaustion.
The new carer asking, “Is it normal to feel this angry sometimes?”
The male carers who stayed behind to speak to me privately.
The carers from minority backgrounds who spoke about cultural barriers and stigma.
These forums matter because carers matter.
Unpaid carers save the system billions. But beyond economics, we hold families together. We absorb crises. We advocate in rooms where we’re not always welcomed.
This month’s Mental Health Carers Forum brought together carers, local authority representatives, and carers’ organisations across Southwark, Lambeth and Lewisham. The main focus of the session was the development of Southwark’s new Unpaid Carers Strategy, alongside wider discussions about safeguarding, service gaps, hospital pathways, and national pressures affecting carers.
The discussion reflected both strategic planning and powerful lived experiences.
1. Development of the New Unpaid Carers Strategy (Southwark)
The Strategy and Policy Lead for Adult Social Care outlined plans to develop a new Unpaid Carers Strategy, due to launch in October 2026, alongside the new Carers Hub (currently going through procurement).
Why a New Strategy?
The council has reviewed its Joint Strategic Needs Assessment (JSNA), which estimates that there are between:
18,000 and 37,000 unpaid carers in the borough
Around 2,000 carers currently known to Adult Social Care
This gap highlights the scale of “hidden carers” who may not be registered, identified, or receiving support.
Importantly, the council acknowledged that strategy priorities should not simply be based on data analysis alone. Instead, they are aiming for genuine co-production — asking carers directly what matters most.
2. Engagement Plan
The strategy is currently in Phase One: Listening and Engagement.
Engagement methods include:
Two in-person focus groups
One online evening session (to accommodate working carers)
A borough-wide survey (in development)
One-to-one carer story interviews
A draft strategy consultation phase
The council hopes to produce a draft strategy by June, followed by further consultation before final sign-off.
Attendance Challenges
While engagement sessions were organised, numbers were lower than hoped:
~16 signed up for morning session
~11 for afternoon
~18 for virtual session
This led to discussion about why engagement can be difficult.
3. Why Engagement Is Difficult
Several themes emerged:
Carers often feel over-consulted but under-informed about outcomes
Carers are extremely time-poor and emotionally stretched
Communication may not be filtering through GP surgeries, mental health services, or hospitals effectively
Some carers do not self-identify as carers
Many want to see tangible change before engaging again
There was also discussion about compensation for carers’ time. While payment isn’t possible, vouchers are being offered to recognise contributions.
A broader issue remains: How do we reach the thousands of carers who are currently unknown to services?
4. Safeguarding and Social Work Concerns
One of the most powerful parts of the session came from carers sharing lived experiences.
Concerns raised included:
Lack of trauma-informed practice
Social workers not understanding autism, ADHD, or PTSD
Carers feeling triggered or retraumatised by professional behaviour
Repeated changes of social worker
Safeguarding flags raised but no follow-up
Carers left to “self-safeguard”
There was frustration that safeguarding processes sometimes feel procedural rather than protective particularly when no one follows up after concerns are logged.
While individual cases cannot be addressed within a strategy meeting, the recurring themes of:
Training
Empathy
Communication
Accountability
Follow-through
will be fed into the strategy consultation.
5. Hospital Pathways & Carer Identification
Discussion also focused on the hospital experience.
Key questions raised:
Are carers being identified at admission?
Are they being referred to carers centres?
Is there a clear pathway from hospital discharge to community support?
Are hospitals promoting local carer engagement events?
It was noted that discharge teams do significant work, particularly around bereavement support, but carers want clearer and more consistent pathways.
There was also discussion about cross-borough complexity especially for carers living near boundaries (e.g. Southwark/Lambeth), where services can feel fragmented.
The need for joined-up working across boroughs and hospital trusts was emphasised.
6. Inclusion & Underrepresented Groups
Several groups were identified as needing more targeted engagement:
Mental health carers
Ethnic minority carers
Male carers (who are often underrepresented)
Young carers
Working carers
There was a clear call to ensure the strategy does not become “one-size-fits-all.”
In particular:
Cultural expectations can prevent some carers from seeking support.
Male carers may be less likely to self-identify.
Working carers face employment pressures despite recent legislation.
7. National Pressures on Unpaid Carers
A short presentation was delivered by Matthew McKenzie on national developments affecting carers.
Financial Pressures
Carer’s Allowance remains one of the lowest benefits of its kind.
Ongoing overpayment recovery cases have caused distress for many carers.
Cost-of-living pressures are increasing hardship.
Many carers are limiting working hours to avoid breaching earnings thresholds.
Service Pressures
NHS workforce shortages.
Increasing waiting lists for mental health services.
Limited psychological support tailored specifically for carers.
Strain on carers centres due to funding pressures.
Policy Gaps
No current overarching national carers strategy.
Low awareness of carers’ rights under the Care Act 2014.
Postcode variation in support.
Inconsistent carer involvement in service design.
It was highlighted that unpaid care is estimated nationally at around £160 billion annually demonstrating the enormous economic value of carers’ contribution.
8. Key Strategic Themes Emerging
Across all discussions, several recurring themes emerged:
Carers must see outcomes from engagement.
Safeguarding must involve follow-up and accountability.
Training for social workers must include trauma-informed and neurodiversity awareness.
Hospital discharge pathways need clarity and consistency.
Carers need better communication and joined-up systems.
Underrepresented groups require targeted inclusion.
Engagement must move beyond consultation into meaningful co-production.
A Caring Mind 