Step Outside, Connect, and Recharge: Join Carers Active Together in Hyde Park

Taking time for yourself as a carer isn’t always easy. The daily responsibilities, emotional demands, and constant care for others can often mean your own wellbeing takes a back seat. That’s why initiatives like Carers Active Together matter more than ever.

This Wednesday 15 April, a national day of action is bringing carers across the UK together to focus on movement, wellbeing, and community and you’re invited to be part of it.

A simple step that makes a difference

As part of the day, Carers UK is hosting a free, friendly wellbeing walk in Hyde Park, which is a chance to pause, breathe, and connect with others who understand the caring journey.

Whether you’re caring for a loved one full-time or supporting someone alongside work and life commitments, this walk is designed to be inclusive, relaxed, and welcoming. There’s no pressure, just an opportunity to enjoy fresh air, gentle movement, and good company.

Event details

  • Date: Wednesday 15 April
  • Time: 11:00am
  • Location: Meet at Serpentine Bar and Kitchen, Hyde Park
  • Cost: Free

As highlighted on the event flyer (page 1), the walk is all about giving carers a chance to “get some fresh air, connect with your community, and enjoy a supportive stroll with local carers.”

Why join the walk?

Sometimes the smallest actions like a walk in the park can have the biggest impact. Taking part in this event can help you:

  • Boost your physical and mental wellbeing
  • Meet other carers and share experiences
  • Feel part of a supportive community
  • Take a well-deserved break in a beautiful setting

You’re not alone

Carers play an essential role in our communities, often quietly and without recognition. Carers Active Together is a reminder that your wellbeing matters too and that support is out there.

If you know someone who is a carer, consider sharing this with them. A simple invitation could make a meaningful difference.

Register your place

Spaces are free, but registration is encouraged. You can sign up here:
👉 https://bit.ly/4uEXwJO

Attending the West Kent Paddock Wood Carers Group

By Matthew McKenzie – Carer Activist

Recently, I had the privilege of attending and speaking at the West Kent Paddock Wood Group, and I wanted to take a moment to reflect on the experience, not just as a speaker, but as a mental health carer among peers who truly understand the journey.

The session took place at Unit 1 Eastlands, Maidstone Road in Paddock Wood, a welcoming and accessible venue that immediately set the tone for openness and support. From the moment I arrived, it was clear that this was a safe space. The event was hosted by Naomi Muigua who is the Social Care Involvement Officer.

The structure of the morning was thoughtfully organised, with time for introductions, discussion, and shared learning, all underpinned by respect, confidentiality, and equality among attendees .

A Community that works to understand carers

What stood out to me most was the diversity of lived experience in the room. Carers supporting loved ones with dementia, autism, and complex health needs came together, each bringing their own story, challenges, and resilience. It reinforced something I’ve long believed: carers often feel invisible in wider society, but in spaces like this, they are seen, heard, and valued.

The group is supported by organisations and professionals who are genuinely committed to reducing isolation and improving access to services. From digital inclusion to transport and community support, there’s a real effort to make sure carers are not left navigating the system alone

Sharing My Journey as a Mental Health Carer

As the invited speaker, I spoke from my own lived experience as a mental health carer. My journey began as a young carer supporting my mother, who developed schizophrenia, while also helping care for my brothers with non-verbal autism. Over the years, that experience has shaped not only my life, but my purpose.

During my talk, I shared:

  • The emotional reality of becoming a carer—often suddenly, without preparation
  • The confusion and isolation that can come with navigating mental health systems
  • The importance of recognising carers as partners in care, not just bystanders
  • The long-term impact on mental health, identity, and wellbeing

I also spoke about the concept of “lived experience”—something I feel strongly should be embedded in health and social care systems. If professionals are to truly understand and support carers, they need to hear directly from those who live it every day.

One of the key messages I left with the group was this:
Carers are the hidden link that holds everything together. Without them, the system simply could not function.

This was taken from my poem off my book.

The Conversations of the group

What made the session particularly powerful wasn’t just the presentation, it was the discussion that followed. Carers openly spoke about:

  • Not knowing where to go for help
  • The complexity of accessing services
  • Feeling that outcomes often depend on how well you can advocate
  • The emotional toll of long-term caring

These are not small issues, they are systemic challenges. But spaces like this group allow those conversations to happen honestly, and more importantly, collectively.

Why Groups Like This Matter

The West Kent Paddock Wood Group is actually a lifeline to carers as it provides:

  • A supportive peer network
  • Access to information and local services
  • A platform for carers’ voices to be heard
  • A sense of belonging that many carers lack

For anyone who is caring for a loved one, especially in mental health, I cannot stress enough how important it is to connect with others who understand. You don’t have to do this alone.

Final Thoughts

Leaving the session, I felt both humbled and encouraged. Humbled by the strength of the carers in the room, and encouraged by the existence of a group that is actively working to support them.

If you are a carer in Kent, or even just exploring what support is available, I would strongly recommend attending the West Kent Paddock Wood Group. It is a space where your voice matters, your experience is valid, and your wellbeing is recognised.

For me, it was not just an opportunity to speak, it was an opportunity to connect, learn, and continue advocating for carers everywhere.

If you want to find out more about Kent County Council support for unpaid carers, see link below.

https://www.kent.gov.uk/social-care-and-health/adult-social-care/care-and-support/caring-for-other-people/support-for-carers

Have You Supported a Loved One Through Mental Health Detention? Your Experience Matters

Caring for someone experiencing mental health difficulties can be challenging, emotional, and at times overwhelming. For many people from minority communities, these experiences can be shaped by additional barriers , including stigma, cultural expectations, language differences, and unequal access to support.

Researchers at University College London (UCL) are carrying out a study to better understand what it’s like for family members, friends, and carers when someone close to them is assessed or detained under the Mental Health Act. They are particularly interested in hearing from people whose voices are often underrepresented in research.


The reason this research matters

People from minority ethnic and cultural backgrounds are more likely to be detained under the Mental Health Act, yet the perspectives of their families and carers are often missing from research and policy discussions.

Your experiences can help:

  • Improve how services support families during difficult times
  • Highlight cultural and community-specific needs
  • Inform fairer and more inclusive mental health policies

By sharing your story, you can help shape better support for others going through similar situations.


Who can take part?

You may be able to take part if:

  • You are aged 16 or over
  • You have supported someone who was assessed or detained under the Mental Health Act
  • This could be as a “nearest relative” or simply as a family member, friend, or carer

The study welcomes participants from all backgrounds and is especially keen to hear from people in minority communities.


What does taking part involve?

Taking part means:

  • A one-to-one interview (online via Microsoft Teams or in person)
  • Talking about your experiences supporting someone during detention
  • The interview lasts around one hour

As a thank you, you will receive a £30 voucher.


Your voice is important

We know these experiences can be deeply personal. You are in control of what you choose to share, and all information will be handled confidentially.

Whether your experience was recent or some time ago, your perspective can make a real difference.


Interested in taking part or learning more?

If you would like more information or are thinking about taking part, you can contact the research team at:

nrmha@ucl.ac.uk


Final thoughts

Supporting someone through mental health detention is not something anyone should feel they have to navigate alone. By contributing to this research, you can help ensure that the realities faced by minority carers are better understood and better supported in the future.

Bipolar Awareness Is More Than One Day – World Bipolar Day 2026

To mark World Bipolar Day 2026, I’ve created a short video highlighting the reality of living with bipolar and the vital role of unpaid carers, friends, and family. Awareness is important, but understanding and everyday support matter just as much.

In this video, I share reflections as a mental health carer and activist, focusing on the human side of bipolar and the people who often support quietly in the background.
👉 Watch the video here: https://www.youtube.com/watch?v=gnn0tfLs2z8

World Bipolar Day is supported globally by organisations including:

In the UK, Bipolar UK (https://www.bipolaruk.org) provides vital peer support for people affected by bipolar, including carers. Carer organisations also play a crucial role in supporting unpaid carers:

Have Your Say: Supporting Safer Mental Health Discharge for Black Communities

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.

https://doodle.com/meeting/organize/id/dwy8n1Ma

You’re also welcome to share this opportunity with others who may be interested. For more info, contact Dr Natasha at natasha.tyler@manchester.ac.uk

We Look After Each Other: A Poem of Care, Community, and Lived Experience

I’m proud to share “We Look After Each Other”.

The poem is a spoken word piece from my upcoming poetry collection Unpaid, Unseen and Yet Unbroken (launching 2026).

This poem centres the lived experiences of ethnic and minority mental health carers, where they continue to show up, often without recognition, navigating systems that can feel complex and unresponsive.

The poem focuses on the quiet strength, shared knowledge, and collective care that exist within our communities.

In the spirit of PCREF, this work highlights the importance of listening to lived experience, valuing cultural understanding, and recognising community as a source of resilience and healing

Help Shape Better Care for People with Multiple Long-Term Conditions

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.

Hospital Carer Discharge Meeting – March Update 2026

By Matthew McKenzie (Chair)

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.

Lewisham, Southwark & Lambeth carer forum update March 2026

Facilitated by Matthew McKenzie – Carer Activist

The March 2026 Lewisham, Southwark and Lambeth Mental Health Carers Forum brought together a small but deeply engaged group of carers. Although numbers were lower than usual, the conversation allowed for something more valuable: honesty, depth, and space for lived experience to be properly heard.

From the outset, the tone was reflective rather than formal. The meeting coincided with World Bipolar Day, which prompted an opening discussion about diagnosis and how often it fails to reflect real-life experience. One carer described how their son’s diagnosis had changed over time—from bipolar to schizoaffective disorder, yet the symptoms and challenges remained largely the same. This led to a wider reflection that services often focus heavily on labels, while carers are more concerned with whether the person is actually supported to live a stable and meaningful life.

There was also a recognition that misdiagnosis is common, particularly where bipolar disorder is initially treated as depression, sometimes leading to inappropriate medication and worsening symptoms. For many carers, the journey to a correct diagnosis is long, frustrating, and emotionally draining.


A shared frustration: being needed, then excluded

As the discussion moved on, a familiar and longstanding issue surfaced again, confidentiality.

Several carers spoke about the contradiction at the heart of the system. They are relied upon heavily during crisis, often holding situations together at home with little support. But once their loved one enters formal services, especially inpatient care, they can suddenly be excluded from conversations.

One carer described escalating concerns about a home treatment team all the way to regulators just to be heard. Another spoke about years of frustration with what was described as the “carer’s lament”: you are essential when things go wrong, but once professionals step in, your voice can be sidelined.

What carers emphasised very clearly is that they are not asking for unrestricted access to confidential information. What they want is much simpler and more reasonable: to be listened to, to have their observations recorded, and to be treated as part of the care system rather than outside it.


Lewisham: transition, discharge, and GP concerns

Much of the Lewisham-focused discussion centred on transitions in care and the role of GPs.

One parent shared the experience of their daughter’s first psychotic episode, which resulted in a five-month hospital stay. Following discharge, she was moved into supported accommodation, but the family were not meaningfully involved in that transition. Communication was limited, and the daughter chose not to share information with her family, leaving them in a difficult position deeply concerned, but largely excluded.

There were also concerns about medication refusal and the risk of relapse, particularly when individuals are discharged while still emotionally fragile. The emotional toll on carers in these situations was evident: watching, waiting, and trying to prevent another crisis without adequate support.

Alongside this, mental health carers from raised ongoing concerns about what happens when people are discharged back to primary care. There was strong anxiety about the lack of GP engagement in mental health pathways. One carer involved in the Lewisham Community Mental Health Transformation programme described repeated attempts to involve GPs in discussions, with little success.

The worry is clear: if someone is discharged too early from specialist services and handed back to a GP who may not have the capacity or expertise to manage complex mental health needs, the system effectively resets often leading to relapse and re-entry into crisis services.

At the same time, there was acknowledgement that some GP practices do provide excellent support. But this inconsistency, what many described as a “postcode lottery” remains a major issue.


Southwark: carer-led work and navigating confidentiality

In contrast, much of the Southwark discussion highlighted strong carer-led involvement, alongside the same systemic challenges.

A carer from Southwark spoke about running inpatient carers groups and co-facilitating sessions linked to outreach and rehabilitation services. There was also involvement in the Patient and Carer Race Equality Framework (PCREF), where carers and service users are contributing directly to shaping services.

This level of involvement shows what is possible when carers are treated as partners. However, even within this more engaged environment, the issue of confidentiality remains difficult to navigate.

The discussion here was more nuanced. It was acknowledged that confidentiality is necessary, but that staff often lack clarity about what can be shared. Carers described the “grey area” where basic information could be communicated, but often isn’t. There was also emphasis on the need for staff training, something that carers themselves are increasingly involved in delivering.

carers from Southwark also highlighted the importance of peer-led spaces. Inpatient carers groups were described as vital, especially for those supporting someone currently in hospital, where isolation and lack of information can be overwhelming.


Lambeth: legacy of collaboration and ongoing involvement

Lambeth’s contribution to the discussion brought a slightly different perspective. one shaped by a longer history of co-production and collaboration.

One participant spoke about their involvement in the Lambeth Living Well Collaborative, a model that has historically placed lived experience and peer support at its centre. There was a sense that Lambeth has been ahead in recognising the value of lived experience, although there was also uncertainty about how much of that approach is still embedded in current services.

An upcoming Lambeth Living Well Collaborative meeting was mentioned, with an open invitation for carers to join and stay connected to ongoing developments.

There was also reference to wider Lambeth-based engagement work happening at the same time, including events asking what changes should be made to mental health services. This reflects an ongoing effort within the borough to involve carers and service users in shaping future provision.

At the same time, carers noted that even in areas with strong histories of co-production, the same structural challenges persist—particularly around confidentiality, access to information, and the pressures placed on families.


Crisis support and gaps in awareness

One of the most striking moments in the meeting came from a carer describing their current situation: a son in relapse, not taking medication, and moving in and out of the house at night. The impact was immediate and severe, no sleep, constant vigilance, and a sense that another crisis was approaching.

What stood out was not just the situation itself, but the fact that the carer was not aware of available crisis support options. Another participant shared information about a crisis line covering Lewisham and Southwark, something they had helped establish years earlier.

This exchange highlighted a recurring problem: services and support may exist, but awareness is inconsistent. Carers often find out about help only through chance conversations, rather than through systematic communication.


National update: Carers UK and the CQC “Share for Better Care” campaign

Alongside the local discussions, the forum also highlighted a national development that could become significant for carers across Lewisham, Southwark and Lambeth.

Carers UK has recently begun supporting a campaign with the Care Quality Commission (CQC) called “Share for Better Care.” This initiative is encouraging unpaid carers across England to come forward and share their experiences of health and social care services.

The intention behind the campaign is to gather real-world evidence directly from carers—what is working, what is not, and where systems are failing. This information is expected to inform how the CQC assesses services in the future, particularly in relation to how well they engage with and support carers.

In the forum, this was welcomed, but also met with a degree of cautious realism. Carers have shared their experiences many times before, often without seeing meaningful change. The key question raised was: what will actually happen with this information once it is collected?

There was a suggestion that this campaign could lead to:

  • future events or consultations involving carers
  • greater scrutiny of how services involve carers
  • potential shifts in how inspections measure “carer involvement”

The forum facilitator indicated they would follow up with Carers UK to better understand what outcomes are expected and whether a speaker could attend a future session to explain the campaign in more detail.

For carers, this presents both an opportunity and a challenge. It is another chance to have their voices heard at a national level, but it also raises the ongoing issue of whether those voices will translate into real, tangible improvements in practice.

London-wide update: taking carers’ voices into policy

The forum also included a detailed update from myseld, who had recently contributed to a London Assembly session on unpaid carers.

They described speaking directly to policymakers about the realities faced by carers across boroughs, including those discussed in forums like this one. A key focus was on mental health carers, who were described as particularly “hidden” within the system.

The update painted a broader picture. Official figures suggest around 600,000 unpaid carers in London, but the real number is likely much higher. Many people do not identify as carers, and as a result, they miss out on support entirely.

Financial pressure was another major theme. Carers often reduce or give up work, face additional costs, and rely on limited financial support. Respite care remains difficult to access, and carers’ assessments frequently do not lead to meaningful help.

Importantly, the discussion emphasised that identification is the starting point for everything. Without being recognised as a carer, none of the available support systems can be accessed.


The underlying reality

Across Lewisham, Southwark and Lambeth, the details may differ slightly, but the core experiences are strikingly similar.

Carers are holding complex situations together, often with limited support. They are navigating systems that can feel fragmented, inconsistent, and at times unresponsive. They are expected to manage risk, prevent crises, and support recovery, yet are not always included in the decisions that affect those outcomes.

And yet, within the forum itself, there was also clear evidence of strength. Carers are not passive participants. They are running groups, training staff, contributing to policy discussions, and supporting each other.


Closing reflection

What this forum made clear is that change is happening—but slowly, and unevenly.

There are examples of good practice in all three boroughs:

  • collaborative work in Lambeth
  • strong carer involvement in Southwark
  • active transformation discussions in Lewisham

But these sit alongside persistent gaps:

  • lack of GP integration
  • inconsistent communication
  • limited recognition of carers’ roles

For those who couldn’t attend, the key message is this:

The issues you experience are not isolated. They are shared, recognised, and increasingly being raised not just in forums like this, but at policy level across London.

And just as importantly your voice, whether in a meeting or not, is part of that collective push for change.


What the new London Assembly carers report really means for unpaid carers

This week as of this blog post, the London Assembly published a major new report on unpaid carers: “London’s unpaid carers: Caring for the carers.”

I had the opportunity to contribute to this work as a carer and advocate, alongside others who shared their lived experience. Seeing those voices reflected in the final report is both encouraging and a reminder of how much still needs to change for unpaid carers in London.

👉 Read the full report:
https://www.london.gov.uk/who-we-are/what-london-assembly-does/london-assembly-work/london-assembly-publications/economy-culture-and-skills-report-londons-unpaid-carers

👉 Carers UK press release:
https://www.carersuk.org/news-and-campaigns/press-releases/new-report-from-the-london-assembly-economy-culture-and-skills-committee-calls-for-more-financial-support-for-londons-unpaid-carers/


The reality: carers are still “hidden”

One of the strongest messages in the report is that many unpaid carers are still not identified.

Too often, people caring for a partner, parent, or child don’t even realise they are classed as a “carer” which means they miss out on financial support, services, and basic recognition.

From my own experience, and what was shared at the Assembly, this is especially true for:

  • Mental health carers
  • Carers from ethnic minority backgrounds
  • Indentification of unpaid carers

If you’re not identified, I feel you don’t exist in the system.


Financial pressure is a major issue

The report possibly confirms what many carers already know:

  • Nearly 1 in 3 carers in London are living in poverty
  • Carer’s Allowance is not enough to live on
  • Many carers have to reduce work or leave employment entirely

There are positive recommendations here like reviewing Carer’s Allowance and reducing travel costs, but these need to turn into real change, not just policy discussions.


Support isn’t working as it should

Another issue raised in the report and something I spoke about is that support often feels like a “tick-box exercise”.

Carers go through assessments, but:

  • Support is limited
  • Funding is inconsistent
  • Real help (like respite care) is hard to access, especially for mental health carers, I mean what does respite actually mean for mental health unpaid carers?

Identification alone isn’t enough. I think It has to lead to meaningful, practical support.


So what needs to happen next?

The report makes some important recommendations:

  • Better identification of carers across London
  • More funding for local carer services
  • Changes to Carer’s Allowance
  • Improved workplace support
  • and a lot more, but you would have to go through the report.

But the key question now is: will this actually be implemented?

Carers don’t need more recognition alone we need action.


Final thoughts

Unpaid carers are holding up the health and social care system every single day.

This report is a very important step forward. But it should be the beginning of change not the end of the conversation.

If you are a carer, or know someone who is, I’d encourage you to read the report and share your experiences. The more visible carers are, the harder it is for the system to ignore us.