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.
If you’ve supported someone through a stay in mental health services, your experience could help improve care for others.
Researchers at The University of Manchester are inviting people with lived experience—including carers to take part in an online workshop focused on improving how mental health services support people during hospital discharge, particularly for individuals from Black heritage communities.
Reason for research
Evidence shows that people from Black communities often face poorer outcomes in mental health care, including barriers to access and challenges during discharge from hospital.
To address this, researchers are working to make future services and research more inclusive, culturally responsive, and grounded in real experiences. Hearing directly from carers is a key part of that work .
Who is running this?
The workshop is being led by Dr Natasha Tyler, a Research Fellow at The University of Manchester, as part of work linked to improving future research and care approaches.
The session will also be supported by facilitators with lived experience, including carers, to ensure discussions are grounded and meaningful .
Who can take part?
You may be interested if you:
Have cared for someone who has been an inpatient in adult mental health services
Have experience of discharge from mental health care
Want to share your perspective to improve future support
What’s involved?
Format: Online (MS Teams)
Duration: 2 hours
Dates: Sessions planned between 23rd April and 8th May 2026
Payment: £60 as a thank-you for your time
Participants will receive questions in advance to help prepare for the discussion.
Why get involved?
Taking part is a chance to:
Help shape future mental health research and services
Ensure carers’ voices are included in decision-making
Contribute to reducing inequalities in care
Share your experience in a supportive environment
How to express interest
If you’d like to take part, you can follow the link in the invitation to share your availability or contact the research team directly.
Caring for someone with multiple long-term health conditions can be both rewarding and challenging. More people than ever are living with conditions like diabetes, asthma, arthritis, or hypertension and these health challenges often affect minoritised ethnic communities disproportionately.
King’s College London is running the INTERCEPTION study to better understand the experiences of carers like you and the people you support. The goal is to improve how community leaders, healthcare professionals, and policymakers perceive and support those living with multiple conditions.
Your Voice Matters
Your experiences as a carer provide invaluable insights into what works, what could be better, and what support is most needed. By sharing your story, you help shape the future of care for people in similar situations, both locally and nationally.
Who Can Take Part
You can join the study if you:
Are 18 years old or above
Live in Coventry, London, or Manchester
Care for someone with two or more long-term physical or mental health conditions
Can communicate in English for an interview
What Participation Involves
The study involves a one-to-one interview lasting 60–90 minutes at a time and place that suits you. Everything you share will be kept confidential. As a thank you for your time, participants receive a £25 voucher.
How to Get Involved
To learn more or sign up, scan the QR code on the flyer or visit this link . If you have any questions, you can contact the research team, Dr Brenda Hayanga and Dr Sujith Prankumar, at interception@kcl.ac.uk.
Your experiences truly matter. By participating, you help researchers understand what carers need and influence better care for minoritised ethnic communities living with multiple long-term conditions.
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.
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.
By Matthew McKenzie – Triangle of Care Community Chair.
The meeting opened with a welcome to carers, professionals, and partner organisations, reinforcing the importance of the Community Group as a collaborative and inclusive space. The Chair highlighted the ongoing commitment to co-production, ensuring that lived experience remains central to all Triangle of Care development and decision-making.
The purpose of the meeting was outlined, with emphasis on shared learning, constructive challenge, and influencing national work. Members were reminded that discussions within the group directly inform improvements to Triangle of Care standards, guidance, and implementation across services.
2. Triangle of Care Update (with Q&A)
Mary Patel – Carers Trust
The Triangle of Care update focused on how the programme continues to evolve as a learning-led, improvement-focused framework rather than a compliance or inspection tool. Members were reminded that the Triangle of Care is designed to support services to reflect honestly on how well carers are recognised, involved, and supported, and to identify practical actions for improvement.
The update highlighted the growing maturity of the self-assessment and peer review process. Increasingly, organisations are using the framework not only to evidence good practice but to challenge themselves, learn from others, and embed carer partnership more consistently across teams and pathways.
Self-Assessment and Peer Review: What’s Working Well
The self-assessment process continues to be a key entry point for organisations engaging with the Triangle of Care. Where we were updated on how self-assessment encourages teams to pause and reflect on everyday practice, policies, and culture, rather than relying solely on written procedures. When combined with peer review, this reflection is strengthened by external challenge and lived-experience insight.
As part of the update, members were updated on emerging learning from Triangle of Care reports, including self-assessment submissions and peer review feedback. These reports were described as an important source of insight into how carer involvement is experienced on the ground, highlighting both areas of strong practice and recurring challenges across services
NOTE: These include reports going back 6 months, so not all NHS trusts listed
Peer review was described as most effective when organisations approach it with openness and curiosity. Lived-experience peer reviewers play a crucial role in asking different questions, highlighting blind spots, and grounding discussions in real-world carer experience.
A key discussion point was how to balance national consistency with local flexibility. Members acknowledged that while the Triangle of Care provides a shared framework and standards, services operate within different contexts, populations, and resource constraints.
Triangle of care and Patient Carer Race Equality Framework updates
The Triangle of Care and PCREF Phase 2 pilot will be launched in April 2026, to test co-produced specialist guidance to support integration of carers from racially marginalised communities into the Triangle of Care.
Alignment with Wider System Priorities
Members discussed how Triangle of Care activity aligns with broader system developments, including Mental Health Act reform, integrated care, and equality frameworks. There was strong agreement that Triangle of Care should not sit in isolation but be embedded within wider quality improvement, safeguarding, and workforce development agendas.
The need to visibly align Triangle of Care with the Patient and Carer Race Equality Framework was reiterated. Members emphasised that carers must be able to see how equality commitments translate into tangible actions within standards, training, and evidence.
Key points
Aligning Triangle of Care with Mental Health Act reform
Embedding within wider system and quality frameworks
Stronger visibility of equality and race equity
Carer Voice and Evidence of Impact
A recurring theme was the importance of demonstrating impact. Members discussed how services can better evidence carer involvement and experience beyond policies and training records. This includes qualitative feedback, lived-experience insight, and examples of how carer input has influenced service design and delivery.
Emerging Challenges and Areas for Development
The update also acknowledged ongoing challenges, including workforce pressures, digital transformation, and uneven awareness of the Triangle of Care across organisations. Members noted that carer involvement can become fragile during periods of change unless it is firmly embedded in systems and culture.
Summary: Where the Programme Is Heading
The Triangle of Care update concluded with a shared understanding that the programme is well-established but still evolving. The focus for the next phase is on deepening impact, strengthening alignment with equality and legislative change, and supporting services to move from intention to consistent, inclusive practice.
Key discussion points
Peer review as a developmental, learning-focused process
Balancing national consistency with local flexibility
Alignment with Mental Health Act reform and equality frameworks
Keeping carer voices central to assessment and review
3. Sharing Experiences as a Peer Reviewer
Carer involved with Avon & whitlshire
A carer presented from her involvement at Avon and Wiltshire Mental Health Partnership NHS Trust, where she is involved as a lived-experience peer reviewer contributing to Triangle of Care.
She shared reflections from her role as a lived-experience peer reviewer. She spoke about the importance of authenticity, trust, and transparency in the peer review process, and how lived experience strengthens both credibility and impact. Her contribution reinforced the value of co-production and highlighted how peer review can challenge assumptions, surface good practice, and promote more carer-inclusive cultures within organisations.
The discussion reinforced that organisational openness and leadership engagement are critical to turning peer review feedback into real change. Members reflected on how hearing directly from peer reviewers deepens understanding of the practical impact of policies on carers.
Q&A / Discussion
Members asked how organisations typically respond to lived-experience feedback.
The involved carer noted that openness and leadership support were key factors in whether reviews led to meaningful change.
Discussion reinforced the importance of preparing services for peer review so that carers feel genuinely welcomed and listened to.
4. Carer Contingency Planning – Presentation and Local Practice
Mary Patel Local example: Carly Driscoll – Bradford District Care
This session focused on carer contingency planning as a key element of carer support and crisis prevention. The presentation outlined why contingency planning is critical in reducing carer anxiety, preventing emergency admissions, and ensuring continuity of care when carers are unable to continue their role.
Carer Contingency Planning (CCP), as championed by Carers Trust, is designed to support carers by planning ahead for times when they might suddenly be unable to continue caring. This might include illness, emergencies, hospitalisation, or other crises. CCP shifts the focus from reactive support during crisis moments to proactive planning that reduces anxiety and prevents avoidable breakdowns in care.
Carers Trust emphasises that CCP is a conversational, personalised process where the carer’s expertise is central. Carers know the routines, preferences, and cues that matter for the person they care for; the goal of CCP is to capture that knowledge in a way that can be shared quickly and effectively with services, families, and emergency responders when needed.
A local practice example from Bradford District Care demonstrated how contingency planning can work in practice, highlighting practical tools, partnership working, and engagement with carers. Discussion explored the benefits of clear, accessible plans, while also acknowledging challenges around awareness, consistency, and uptake
The local practice example demonstrated how contingency planning can be embedded into routine work through partnership approaches and proactive engagement with carers. Members discussed the importance of introducing plans early and reviewing them regularly.
Key features of the Bradford approach
Routine integration: CCP discussions happen early, not just in crisis moments
Partnership working: Health, social care, and voluntary sector staff work in concert
Accessible documentation: Plans are shared in forms that carers can use and update
Support for carers: Carers are supported to lead the planning, not be passive recipients
Ongoing review: Plans are revisited as needs and circumstances evolve
Benefits seen locally
Carers report feeling more confident and less anxious
Greater clarity across professionals when carers are unavailable
Fewer last-minute, unplanned crises or service escalations
Better use of local support networks when official services are stretched
Q&A / Discussion
Questions focused on how contingency plans are introduced to carers and reviewed over time.
Members raised concerns about low awareness of contingency planning among carers not already engaged with services.
Discussion highlighted the need for flexibility, recognising that carers’ circumstances can change rapidly.
5. Carer Contingency Planning – System Perspective
Sara Lewis – SW London ICB
Sara Lewis’s session focused on Carer Contingency Planning (CCP) as a core, preventative element of carer support rather than a reactive or optional add-on. CCP is a structured way of planning for what should happen if a carer is suddenly unable to continue caring due to illness, crisis, exhaustion, or an emergency. At its heart, CCP is about reducing uncertainty and anxiety for carers while ensuring continuity and safety for the person they support.
Sara emphasised that effective CCP recognises carers as partners with expert knowledge of the person they care for. The process supports carers to articulate what matters most, what routines and support are essential, and who needs to be contacted in an emergency. When done well, CCP helps prevent avoidable crises, emergency admissions, and breakdowns in care by making plans visible, accessible, and shared across relevant services.
Accessibility was a major theme, particularly the risks of digital exclusion. While digital tools can be effective, members stressed the need for non-digital options, language support, and culturally appropriate approaches to ensure equity.
Key Takeaways from Sara Lewis’s Session
Carer Contingency Planning is preventative, not reactive
CCP is built on early, ongoing conversations with carers
Plans should reflect what matters to carers and the cared-for person
CCP must be accessible, inclusive, and culturally appropriate
Digital tools can help, but must not increase exclusion
Successful CCP requires shared ownership across services
When embedded well, CCP reduces crisis, anxiety, and system pressure
Q&A / Discussion
Members questioned how to balance digital innovation with the risk of digital exclusion.
Language barriers and accessibility for carers with different communication needs were highlighted.
Discussion emphasised that contingency planning must be embedded into standard care planning processes, not treated as optional or additional.
6. Looking Ahead: Priorities for the Community Group
The “Looking Ahead” discussion focused on how the Triangle of Care Community Group can continue to influence meaningful change for carers in an evolving policy and practice landscape. Members reflected on the increasing complexity of health and care systems and the importance of ensuring that carers are not left behind as reforms, digital transformation, and workforce pressures accelerate.
A strong theme throughout the discussion was visibility, making carer involvement, equality, and partnership explicit in practice, evidence, and outcomes. Participants emphasised that carers must not only be recognised in principle but experience consistent involvement and support in real-world settings. The group agreed that the next phase of work should strengthen both strategic influence and practical implementation.
Mental Health Act Reform and Carer Involvement
Members discussed the implications of upcoming Mental Health Act reform, particularly around carers’ rights, information-sharing, and involvement in decision-making. There was recognition that Triangle of Care principles provide a strong foundation for supporting services to meet new expectations, but that further work will be needed to translate legislation into everyday practice.
The group highlighted the risk that carers could be inconsistently involved if workforce understanding is weak or if systems focus narrowly on legal compliance. Proactive guidance, training, and examples of good practice were seen as essential to ensure carers are meaningfully included rather than consulted as an afterthought.
Equality, Race Equity, and Inclusion
A central priority looking ahead is ensuring that Triangle of Care activity visibly aligns with the Patient and Carer Race Equality Framework (PCREF). Members stressed that carers from racialised and marginalised communities often face additional barriers to involvement, including mistrust, cultural misunderstandings, and unequal access to support.
The group agreed that equality must be embedded into standards, peer review evidence, and training—not treated as a parallel or optional agenda. This includes capturing meaningful data, listening to diverse carer voices, and ensuring culturally responsive practice is clearly demonstrated.
Workforce Training and Education
Workforce development was identified as a critical lever for long-term change. Members highlighted the need to strengthen carer awareness training across all roles, particularly for staff new to mental health and social care settings. Without this foundation, carer involvement remains inconsistent and dependent on individual attitudes rather than organisational culture.
There was strong support for influencing pre-registration education, including universities and training providers, to embed carer awareness earlier. This was seen as an opportunity to normalise partnership with carers from the start of professional careers rather than trying to retrofit it later.
Key points
Strengthening carer awareness across the workforce
Embedding Triangle of Care principles early in training
Influencing universities and pre-registration pathways
Moving from individual goodwill to system-wide culture change
Digital, Data, and Accessibility
Digital transformation featured prominently in the discussion, with members acknowledging both its potential and its risks. While improved data systems and digital tools can support information-sharing and coordination, there was concern that carers without digital access or confidence may be excluded.
Participants emphasised that digital solutions must be designed inclusively, with non-digital alternatives always available. Data collection should support understanding of carer experience and inequality, not become a barrier to support.
Key points
Digital tools should support, not replace, relationships
Risk of digital exclusion for some carers
Importance of non-digital alternatives
Using data to improve equity, not reinforce gaps
Young Carers and Marginalised Groups
Supporting young carers and carers from marginalised communities was highlighted as a continuing priority. Members noted that these groups are often under-identified and less likely to be involved in care planning or decision-making, despite carrying significant caring responsibilities.
The group agreed that future work should focus on visibility, early identification, and tailored approaches that recognise the specific needs and challenges faced by these carers. Partnership with education, community, and voluntary sector organisations was seen as essential.
Key points
Improving identification of young carers
Addressing barriers faced by marginalised carers
Tailored, age-appropriate and culturally sensitive support
Stronger partnership working beyond health services
Collective Commitment Moving Forward
The discussion concluded with a shared commitment to using the Community Group as a platform for influence, learning, and accountability. Members recognised the value of continuing to share practical examples alongside strategic discussion, ensuring that Triangle of Care principles are translated into everyday practice.
Looking ahead, the group aims to remain proactive, inclusive, and responsive—supporting services to recognise carers as equal partners and ensuring that no carer is left unseen or unsupported as systems evolve.
Key discussion points
Preparing for Mental Health Act reform
Embedding the Patient and Carer Race Equality Framework
Improving workforce training and education pathways
Supporting young carers and marginalised communities
Improving data and digital systems without exclusion
As Chair I thanked contributors and reaffirmed the importance of continued collaboration to ensure carers are recognised as equal partners in care, with Triangle of Care principles translated into meaningful practice across services.
For those interested to hear more about triangle of care, see details below
Chaired by Matthew McKenzie, Lived-Experience Carer
The latest meeting of the National Ethnic Mental Health Carer Forum brought together unpaid minority carers, community partners and four NHS mental Trusts (Avon & Whiltshire were kind enough to be included to update) to explore progress toward the Patient & Carer Race Equality Framework (PCREF), share challenges, and elevate lived-experience voices. As always, I ensured the space remained honest, fast-paced and rooted in what truly matters to ethnic minority carers: being heard, understood and included.
My latest blog for the November forum captures key highlights from each Trust, along with questions raised by attendees, reflecting the critical concerns and lived realities that continue to shape PCREF work across the country.
1. Avon & Wiltshire Mental Health Partnership Trust (AWP)
Focus: Triangle of Care, PCREF oversight, carer champion roles.
Avon & Wiltshire outlined how their PCREF programme is being driven through a clear governance structure, including a central Oversight Group and locality-based meetings. These layers ensure that learning from communities and staff filters upward and influences whole-trust priorities. Their collaboration with Nilaari (I think that is what their called), a long-standing community organisation supporting racially marginalised groups, has been key in grounding their PCREF work in authentic community voice.
A central pillar of their presentation was the strengthening of the Triangle of Care and carer-related PCREF oversight. They recognised that carer involvement cannot rely on goodwill or isolated champions; it requires structurally defined roles, written responsibilities, and consistent organisational expectations. The Trust is working on ensuring that every team and ward embeds a carer champion, whose purpose is not to “do everything for carers”, but to support cultural change within the workforce so that carers are recognised as equal partners.
They emphasised the importance of building staff capacity in cultural humility and safe conversations about race. AWP acknowledged that staff often feel unprepared to discuss ethnicity, discrimination or identity with carers. To address this, the Trust has created psychologically safe internal spaces, particularly for racially marginalised staff—to process experiences and explore how structural and interpersonal inequalities impact both staff wellbeing and patient care. This cultural environment is foundational to PCREF implementation because it shapes how confidently staff engage with diverse carers.
Key Points:
Carer champions must support, not replace, teams in working with carers.
Emphasis on psychological safety for racially marginalised staff and carers.
Encouraging honest conversations around race, trauma, and culture across staff teams.
Questions raised by attendees:
How do you embed cultural awareness within staff teams, not just for carers? – Concern that staff dynamics and cultural differences must be addressed to create consistent culturally responsive care.
How do staff and leaders hold ‘difficult conversations’ about race and safety? – Attendees wanted clarity on how psychological safety is practiced and how managers are supported.
🌟 2. Birmingham & Solihull Mental Health NHS FT
(Children & Young People’s Division – “Co-STARS” programme)
Birmingham & Solihull (CYP) presented one of the most detailed and emotionally grounded PCREF programmes, shaped heavily by lived-experience research with Black diaspora families. Their PCREF priorities, knowing our communities, transforming with communities, and delivering care that works reflect a commitment to embedding cultural responsiveness at every step. Their partnership with the University of Birmingham and Forward Thinking Birmingham has produced the Co-STARS project, a blend of lived-experience-led community work and staff training modules.
A major part of their PCREF advancement comes from working intensively with families to capture how racialised parents feel when using services. The Trust shared powerful testimonies from Black carers who described needing to “emotionally self-regulate” in meetings to avoid being labelled angry, unstable or cold. Parents also highlighted the emotional labour of protecting their children from stereotypes such as the “angry Black boy”, as well as fears of being adultified or dismissed. These insights have directly reshaped responses from clinical teams and informed the development of carers’ passports and safe spaces.
Birmingham & Solihull also emphasised building structures to ensure that their care pathways become culturally competent and adaptive. They are embedding PCREF champions across all clinical pathways, from eating disorders to psychosis and autism, ensuring diversity and inclusion principles shape every aspect of assessment, treatment and review. The Trust is also developing e-learning on culturally responsive practice, and expanding identity-specific support spaces (e.g., Black Carers Groups and new plans for Asian carers’ spaces). This multi-layered approach reflects a commitment to PCREF that is both structural and deeply relational.
Key Points:
Embedding culturally competent conversations within CYP teams.
Developing a Black Carers Group and safe spaces for racialised parent groups.
New e-learning on culturally responsive practice (from Co-STARS package).
Use of carer passports to ensure carers feel like equal partners.
Strong focus on how ethnic minority parents feel judged or misread by services (e.g., “angry Black woman,” “cold mother”) – themes drawn directly from carer focus groups.
Recognising adultification, stereotyping, and the emotional labour families perform.
Questions raised by attendees:
What about older adult Black communities? – Carers questioned how older Black adults, shaped by decades of racism, would be included in PCREF work.
Are you working with the police on cultural awareness? – Concerns around disproportionate use of Section 136 and stereotypes (e.g., assuming someone is “aggressive” because they speak loudly or gesture).
How will parent–carer voices shape service pathways and outcomes across all diagnoses (e.g., autism, psychosis)?
3. Sussex Partnership NHS Foundation Trust
Sussex Partnership presented PCREF as a three-pillared programme: data, co-production & engagement, and workforce development. Their first priority is improving ethnicity and protected characteristics data, which they acknowledged has historically been inconsistent. Sussex is launching a behavioural-change campaign that involves interviewing service users from minority backgrounds about why they may decline to share ethnicity, alongside staff interviews to understand documentation issues. Their goal is a transparent baseline from which meaningful PCREF action can be driven.
The Trust also described significant investment in a new data infrastructure via Power BI dashboards. These tools will pull together real-time information on areas such as restraint, Section 132 rights, and involuntary detention by ethnicity. The Trust stressed that PCREF cannot function without high-quality data because inequalities must be clearly visible and accessible to teams at every level—from ward managers to executive boards. Their future ambition is to enable quicker identification of disparities and faster interventions that prevent harm.
Sussex’s strongest focus was on building genuine co-production through their Expert Delivery Group (EDG). Unlike past approaches where community partners were only consulted, the EDG is designed as a collaborative decision-making space. Sussex acknowledged up front that phase 1 of PCREF planning did not fully embody equal partnership, and committed to ensuring that phase 2 will be co-produced from the ground up. The EDG will define what co-production means, co-design PCREF implementation plans, and shape updates that reflect community priorities, trust recovery, and anti-racist aspirations.
Key Points:
A behavioural-change campaign to improve ethnicity data recording (currently 65% compliance).
Development of Power BI dashboards for rapid inequality analysis.
Defining anti-racist and cultural competency skills for staff, tied to new EDI training.
Creation of the Expert Delivery Group (EDG) as a collaborative community–trust space.
Questions raised by attendees:
Is this “real” co-production or consultation? – Attendees challenged Sussex on whether the initial plan was created with the community or presented to them.
How will service users and carers hold equal power within co-production?
How will your anti-racism ambitions be demonstrated externally to communities? – Attendees expressed concerns that staff training alone does not reassure communities.
How will carers’ needs be embedded in PCREF (Triangle of Care)?
🌟 4. Kent & Medway Mental Health NHS Trust
Presenter:Kamellia (with contribution from Harriet – Lived Experience)
Kent & Medway showcased a comprehensive and governance-driven PCREF structure supported by their Equity for All Assurance Group. The Trust has embedded health inequalities into its broader strategy and is working to ensure that PCREF, protected characteristics data and health equity are woven into everyday practice. With the Trust’s newly updated name and identity, PCREF sits at the centre of a renewed commitment to equitable access, outcomes and patient experience across Kent and Medway.
Their PCREF progress includes delivering cultural competence training to 259 senior leaders, a significant investment in shifting leadership behaviour and expectations. They have also identified major data disparities in areas such as complaints, where ethnicity recording is only around 30%. To address this, they are rolling out the About Me form across their clinical system (Rio), which streamlines demographic and protected characteristics documentation for both carers and patients. This step is being supported by staff training designed to build confidence in discussing sensitive identity-related topics.
Kent & Medway also highlighted the expansion of their new Involvement & Engagement Team, which links directly with communities across East, West and North Kent. They are testing a Health Inequalities Toolkit, improving carer experience data collection, and creating new Family, Friends & Carers forms that capture protected characteristics, communication needs, and whether a carers pack was offered. The Trust’s approach is detailed, structural and long-term, aiming to embed PCREF as part of “business as usual” rather than a separate initiative.
Key Points:
259 senior leaders trained in cultural competence.
New About Me demographic/protected characteristics form launching trust-wide.
Major data gaps identified (e.g., only 30% ethnicity data for complaints).
New Involvement & Engagement Team connecting with community groups.
Testing the Health Inequalities Toolkit .
New Family, Friends & Carers Information Form including carer-pack tracking.
Questions raised by attendees:
Do you provide information in languages other than English? – Carers stressed that if translations don’t exist, PCREF is inaccessible from the start.
How will carers be supported to attend meetings given their unpredictable caring responsibilities?
How will you gather demographic data for carers when many do not have Rio records?
How will minority groups be reached in areas where the Trust’s population is overwhelmingly White British?
5. Carer Support Organisation (Kent & Medway Carers Support)
Presenter:Donna Green (involve Kent)
Key Points:
They run trust-wide carer experience groups and targeted workshops.
Emphasised difficulty for carers to attend meetings due to constant demands.
Highlighted the need for multiple approaches, including creative well-being sessions.
Closing Reflections from the Forum
I wrapped up the session acknowledging:
The strong desire across Trusts to improve PCREF delivery.
The pressure to progress quickly without losing sight of lived experience leadership.
The need to bring CQC into future meetings for transparency around expectations.
The importance of ethnic minority carers having a forum that values honesty over polished presentations.
Final Thoughts
This month’s forum demonstrated that while progress continues nationally, there remain shared challenges across NHS Mental HealthTrusts:
Recording ethnicity and protected characteristics meaningfully
Embedding anti-racism beyond training modules
Meeting the needs of Black, Asian and other racialised carers
Co-production that is real, not rhetorical
Involving carers whose time and emotional capacity are already stretched
Ensuring safety, trust and humanity in every interaction.
Above all, the session showed that ethnic minority carers are not passive observers they’re leading, questioning, shaping and insisting on accountability at every step.
By Matthew McKenzie facilitator of National ethnic carer forum and Chair of Triangle of Care Community Group
Racism is not a distant or abstract concept it is a lived reality for many individuals and families, particularly those from Black, Asian, and other minority ethnic backgrounds. Its effects are pervasive, touching every aspect of life, from education and employment to housing, healthcare, and policing.
This article is a transcript of the video below.
In the UK and beyond, the consequences of racism are especially pronounced in the realm of mental health, where both direct and indirect forms of discrimination create barriers to wellbeing and access to care.
Written by: Matthew McKenzie – WLHT co-facilitator of ethnic carer group and Triangle of Care Community Chair
The Irish Cultural Centre in Hammersmith was filled with warmth and purpose on June 12th, as carers, professionals, and community leaders came together for the West London NHS Trust’s Carers Event in support of Carers Week 2025.
As Chair of the Triangle of Care Community and an involved carer for West London NHS Trust, I was interested in the carers conversations, and sense of solidarity among all those present.
A Caring Mind 