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.
A Caring Mind 