Stories are powerful. They carry memory, experience, and truth in ways that forms and systems often cannot. For unpaid minority carers, our stories are not just reflections, they are essential to understanding the full picture of care.
I’ve recently shared a poem, “Our Stories Matter,” from my upcoming poetry book. It explores the importance of lived experience, intergenerational memory, and the voices that are too often overlooked within health and social care systems.
While assessments, care plans, and clinical notes tell part of the story, they rarely capture the depth of what families and carers experience every day. Our stories provide context. They bring meaning and complete the picture.
This is especially important within the context of PCREF, where recognising lived experience and cultural understanding is key to improving care and addressing inequalities. When carers’ voices are not heard, something vital is missing.
This poem is a reminder that our stories are central.
I chaired our March hospital discharge network meeting with a real sense of momentum building across the system. What continues to strike me is the mix of voices in the room, commissioners, carers centres, hospital representatives, and grassroots advocates all trying to tackle the same persistent issue: how we properly involve and support unpaid carers during and after hospital discharge.
As someone with lived experience, particularly in mental health and complex care, I always come back to one key question: Are carers being treated as partners, or are they still being treated as visitors?
This meeting gave us a very honest answer progress is happening, but there is still a long way to go.
Key Presentation: Derbyshire HConnect Project
Emma’s presentation was, for me, an important part of the meeting not because it introduced something completely new, but because it clearly articulated what many carers have been saying for years, and then actually did something about it.
What stood out immediately was that this wasn’t a project designed in isolation. It was built directly from carer voice and lived experience. The starting point wasn’t “how do we improve discharge?” it was “what are carers actually experiencing right now?”
And what carers described was difficult to hear, but not surprising.
Carers spoke about not being recognised at all. Some said no one had even asked if they were a carer. Others described situations where their knowledge of the person they care for was ignored, even when it was critical. One example that stayed with me was a carer describing their loved one being discharged in the middle of winter, late at night, without proper clothing or preparation.
There was a consistent feeling that once someone enters hospital, the carer’s role is almost paused or worse, dismissed entirely.
What the HConnect project does differently is acknowledge that this isn’t just a communication issue it’s a system and culture issue.
Instead of relying on one intervention, the model works across multiple layers of the hospital system. It introduces dedicated hospital liaison workers who build relationships with wards, while also ensuring carers themselves are visible and supported directly on-site. At the same time, it invests in staff through training, guidance, and practical tools so that engaging carers becomes part of everyday practice rather than an optional extra.
What I found particularly important is that the project doesn’t assume staff are unwilling—it recognises that many staff simply lack the confidence, knowledge, or structure to engage carers properly. In fact, the findings showed that many hospital teams had never received any formal carer awareness training and were often unaware that carers even have a legal right to be involved in discharge planning.
The research element of the project adds another layer of depth. Through interviews with carers, several consistent themes emerged.
Carers described feeling invisible—treated as visitors rather than partners in care. They talked about their expertise being dismissed, even when they knew the patient best. Communication was often unclear or inconsistent, and discharge frequently felt rushed, with little notice or preparation. In many cases, carers ended up acting as the safety net catching mistakes, coordinating care, and managing complex needs on their own once the person returned home.
What struck me most is that these issues aren’t just isolated incidents they are patterns.
But importantly, the presentation didn’t just focus on what’s going wrong. It also highlighted what good looks like. In situations where carers were listened to, involved early, and treated as equal partners, the entire experience changed for both the carer and the patient. The challenge now is making that level of practice consistent, not exceptional.
The project is already showing tangible impact. There has been a noticeable increase in carers being identified within hospital settings, more referrals coming directly from health professionals, and hundreds of carers receiving support through the programme.
For me, the biggest takeaway from this presentation is this:
This isn’t about adding more services it’s about changing behaviour across the system.
The HConnect model recognises that for carers to be properly involved, three things need to be in place: staff need the capability to identify carers, the opportunity within the system to engage them, and the motivation to see this as a core part of care. Without all three, change simply won’t stick.
And that’s why this work matters. Because until carers are consistently seen, heard, and included, we will continue to see the same issues repeating no matter how many initiatives we introduce.
Lewisham Commissioner Update
From Lewisham’s commissioning side, there were some strong practical developments.
A key initiative is the rollout of a carer welcome pack, designed to be:
Clearly visible in hospital settings
Easily accessible to carers at the point of need
This is being strengthened through:
Increased collaboration with hospital staff
Plans to expand distribution across wards
From Lewisham, we also received a really significant update around system-level change, particularly the development of a Standard Operating Procedure (SOP) for engaging unpaid carers in hospital settings.
This work has been led across South East London ICB, with an external partner supporting the design. The aim of the SOP is to provide:
Clear guidance to hospital wards
Practical prompts and questions for staff
A consistent approach to identifying and engaging carers during hospital stays
What stood out to me is that this isn’t just a document, it’s designed to change behaviour on the ground. It focuses on something simple but powerful: how staff start conversations with carers and recognise the people already supporting patients.
In Lewisham, University Hospital Lewisham was selected as one of the pilot sites, with two wards testing the approach. The next stage is particularly important:
The SOP is being embedded into Trust templates
It is due to be presented to the Trust board for formal approval
There are plans to roll this out across Lewisham and Greenwich NHS Trust, including Queen Elizabeth Hospital (Woolwich)
What I found especially encouraging is that carers have been involved throughout:
Input gathered through workshops
Further feedback taken to the Lewisham Council’s Open Carers Forum
Ongoing opportunity for boroughs to adapt the SOP to local needs
Alongside this, Lewisham is continuing practical work on the ground:
Strengthening links between commissioned carers services and hospital staff
Expanding visibility through carer welcome packs and information points within the hospital
For me, this is one of the most important developments discussed in the meeting. If implemented properly, a shared SOP like this has the potential to:
Reduce inconsistency across wards
Embed carer identification into everyday practice
Move us closer to a system where carers are routinely recognised—not accidentally discovered
Hospital Update: Lewisham & Greenwich NHS Trust
A really important contribution came from the patient experience perspective at Lewisham and Greenwich NHS Trust, which covers University Hospital Lewisham and Queen Elizabeth Hospital (Woolwich).
From the Trust side, there was clear recognition that:
The work carers are doing is valuable and essential to patient outcomes
There is a need to improve physical visibility of carer support within hospital settings
Space and infrastructure need to better support engagement (for example, identifying a permanent location for carer engagement and resources)
There was also a willingness to:
Explore how carer-led engagement (including my own involvement) can be better embedded within the hospital environment
Strengthen links between patient experience teams and carers organisations
From my perspective, this was a positive and practical discussion. Too often we talk about engagement in theory—but here we were talking about where the table actually goes on the ward, and that level of detail matters.
Because if carers can’t see you, they can’t access you.
Greenwich (Commissioning & Mental Health)
Greenwich colleagues spoke about their broader system approach, particularly within mental health.
Their focus includes:
Identifying gaps in carer support across services
Embedding carers within commissioning priorities
Understanding what carers themselves want from local systems
They also posed an important question to the group: What should local authorities prioritise for carers?
My answer was straightforward: We need clear leadership and accountability, a named person or role responsible for carers across the system.
Without that, good work risks becoming fragmented.
Lambeth Carers Hub (King’s College Hospital & St Thomas’ Hospital)
Lambeth shared a detailed and honest update regarding their work across King’s College Hospital and Guys and St Thomas Hospital
Key points included:
Their hospital discharge project is continuing, but with reduced capacity due to funding constraints
They have secured a short-term extension, allowing work to continue until September
A major focus is now embedding carer awareness training into staff induction processes
Importantly, they raised a systemic issue:
The need to hold commissioned care agencies accountable, particularly when carers report poor-quality care after discharge
This is critical. Discharge doesn’t end at the hospital door—if the care package fails, the whole system fails.
Southwark Council Update
From Southwark, we heard about work being done at a system level, particularly linked to:
Development of discharge information resources across South East London
Collaboration across boroughs and NHS partners
The intention is for these resources to be:
Widely accessible and adaptable
Used across multiple organisations, rather than siloed locally
Given the proximity to major hospitals like King’s College Hospital and GSTT hosptal, this kind of coordinated approach is essential.
City & Hackney Carers Centre (Homerton Hospital)
A more concerning update came from City & Hackney, particularly regarding work linked to Homerton Hospital.
They reported:
The loss of a hospital discharge worker role
A significant drop in referrals to the carers centre as a result
Reduced presence within the hospital environment
This clearly demonstrates something we often say but don’t always quantify:
When you remove dedicated roles, you remove outcomes.
The worker’s presence had been directly contributing to engagement and referrals. Without that, carers are once again at risk of being missed.
Richmond Carers Centre (Kingston Hospital)
Updates from Richmond Carers Centre highlighted both strong engagement and opportunities to build further.
Positives:
Strong referral pathways coming through from Kingston Hospital, particularly linked to discharge activity
Ongoing professional awareness work, helping improve understanding of carers across services
There is a clear foundation here, with established relationships already supporting carers into services. The opportunity now is to build on that by increasing visibility and strengthening in-hospital engagement further.
Richmond Borough Mind (Springfield Hospital – SWLSTG)
From Richmond Borough Mind, the focus was more specifically on their work within South West London and St George’s Mental Health Trust (SWLSTG), particularly at Springfield Hospital.
Key challenges highlighted:
Difficulty accessing wards within Springfield Hospital, limiting direct engagement with carers
Limited contact with carers when based in general hospital areas rather than embedded on wards
Ongoing challenge in identifying where carers are most visible and reachable within mental health settings
What came through strongly is that, despite proactive efforts such as setting up stands and being present on-site, footfall from carers remains low unless services are embedded directly into ward environments.
This reinforces a key point for me:
In mental health settings especially, access is everything—if you’re not where carers are, you simply won’t reach them.
Bexley Carers (Post-Discharge & Reablement Focus)
Bexley brought an important perspective that often gets overlooked what happens after discharge.
Their work is focusing on:
Supporting carers once reablement packages end
Recognising that carers often deprioritise themselves during discharge, only to struggle later
Increasing concern around safeguarding and mental health, particularly in dementia care
This is where we need to shift thinking: Discharge is not the endpoint—it’s the start of a new phase of care.
Cross-Cutting Reflections
Across all updates, several consistent themes emerged:
Inconsistent carer identification across wards and trusts
Funding fragility, with projects often short-term
Need for embedded training, not optional sessions
Importance of visibility within hospital environments
Gaps in post-discharge support, especially after reablement
My Closing Thoughts
Chairing this meeting, I was struck by both the progress and the gaps.
There is innovation happening in Derbyshire, in Lambeth, in Lewisham, across South East London. But it’s uneven. And carers feel that inconsistency every day.
For me, the priority remains clear:
Identify carers early
Involve them properly
Support them beyond discharge
Because when we get that right, everything else improves—outcomes, safety, and experience.
And until we get that right consistently, we still have work to do.
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 Update
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.
Today, I had the privilege of being part of King’s College Hospital NHS Foundation Trust’s Mental Health Fair, held on Thursday 2nd October, in recognition of World Mental Health Day 2025.
The event brought together a wide range of organisations and community groups working tirelessly to support the mental health and wellbeing of patients, families, and carers.
Why carers need to be at the heart of mental health conversations
As someone who has cared for a loved one experiencing mental health challenges, I know firsthand the importance of recognising and supporting carers through the groups i run.
The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.
Peer Support: Insights from Experience
Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.
By Triangle of Care community chair Matthew McKenzie FRSA BEM
For the month of March, unpaid carers, NHS professionals, and key stakeholders came together for another Triangle of Care National Community Meeting, which is a powerful space of collaboration, reflection, and shared purpose. Chaired by Matthew, the meeting spotlighted significant developments in carer engagement, mental health service standards, and equity frameworks across the NHS.
On March 7, 2025, The Foundry in London became the epicenter of a powerful movement towards racial equity in healthcare.
The London Anti-Racism Collaboration for Health (LARCH), Health Innovation Network and Race Equality Foundation hosted their Annual Conference and Learning Event, bringing together thought leaders, policymakers, and community advocates dedicated to dismantling systemic racism in health and social care.
Setting the Stage: A Call for Change
The event was chaired by Dame Marie Gabriel, a pioneering advocate for equity in the NHS. Kicking off with opening remarks from Dr. Debbie Weekes-Bernard, Deputy Mayor for Communities & Social Justice, the conference established a clear message: structural racism in healthcare is a pressing issue that demands systemic solutions.
Are you passionate about making healthcare more accessible? We’re inviting patients with physical or sensory disabilities, impairments, and carers to share their experiences and help shape improvements to our outpatient services.
Take part in a two-hour walkaround and meeting at University Hospital Lewisham (Tuesday, 28 January at 10am) or Queen Elizabeth Hospital (Wednesday, 5 February at 2pm). Your insights will directly influence changes to ensure our services are inclusive and accessible for everyone.
Welcome to another blog post by carer activist and ambassador Matthew McKenzie. I raise awareness of unpaid carers who support those with long term ill health. This time my blog focus is on the inclusion of carer only groups at mental health service development.
Blog by Matthew McKenzie aimed at unpaid carers whose cared for will soon be discharged from hospital. Here are some tips to take note of to help in smooth transistion back into the community.
To watch the video lecture nearly 30 mins, see below.
A Caring Mind 