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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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This month’s Mental Health Carers Forum brought together carers, local authority representatives, and carers’ organisations across Southwark, Lambeth and Lewisham. The main focus of the session was the development of Southwark’s new Unpaid Carers Strategy, alongside wider discussions about safeguarding, service gaps, hospital pathways, and national pressures affecting carers.

The discussion reflected both strategic planning and powerful lived experiences.

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1. Development of the New Unpaid Carers Strategy (Southwark)

The Strategy and Policy Lead for Adult Social Care outlined plans to develop a new Unpaid Carers Strategy, due to launch in October 2026, alongside the new Carers Hub (currently going through procurement).

Why a New Strategy?

The council has reviewed its Joint Strategic Needs Assessment (JSNA), which estimates that there are between:

• 18,000 and 37,000 unpaid carers in the borough
• Around 2,000 carers currently known to Adult Social Care

This gap highlights the scale of “hidden carers” who may not be registered, identified, or receiving support.

Importantly, the council acknowledged that strategy priorities should not simply be based on data analysis alone. Instead, they are aiming for genuine co-production — asking carers directly what matters most.

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2. Engagement Plan

The strategy is currently in Phase One: Listening and Engagement.

Engagement methods include:

• Two in-person focus groups
• One online evening session (to accommodate working carers)
• A borough-wide survey (in development)
• One-to-one carer story interviews
• A draft strategy consultation phase

The council hopes to produce a draft strategy by June, followed by further consultation before final sign-off.

Attendance Challenges

While engagement sessions were organised, numbers were lower than hoped:

• ~16 signed up for morning session
• ~11 for afternoon
• ~18 for virtual session

This led to discussion about why engagement can be difficult.

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3. Why Engagement Is Difficult

Several themes emerged:

• Carers often feel over-consulted but under-informed about outcomes
• Carers are extremely time-poor and emotionally stretched
• Communication may not be filtering through GP surgeries, mental health services, or hospitals effectively
• Some carers do not self-identify as carers
• Many want to see tangible change before engaging again

There was also discussion about compensation for carers’ time. While payment isn’t possible, vouchers are being offered to recognise contributions.

A broader issue remains: How do we reach the thousands of carers who are currently unknown to services?

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4. Safeguarding and Social Work Concerns

One of the most powerful parts of the session came from carers sharing lived experiences.

Concerns raised included:

• Lack of trauma-informed practice
• Social workers not understanding autism, ADHD, or PTSD
• Carers feeling triggered or retraumatised by professional behaviour
• Repeated changes of social worker
• Safeguarding flags raised but no follow-up
• Carers left to “self-safeguard”

There was frustration that safeguarding processes sometimes feel procedural rather than protective particularly when no one follows up after concerns are logged.

While individual cases cannot be addressed within a strategy meeting, the recurring themes of:

• Training
• Empathy
• Communication
• Accountability
• Follow-through

will be fed into the strategy consultation.

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5. Hospital Pathways & Carer Identification

Discussion also focused on the hospital experience.

Key questions raised:

• Are carers being identified at admission?
• Are they being referred to carers centres?
• Is there a clear pathway from hospital discharge to community support?
• Are hospitals promoting local carer engagement events?

It was noted that discharge teams do significant work, particularly around bereavement support, but carers want clearer and more consistent pathways.

There was also discussion about cross-borough complexity especially for carers living near boundaries (e.g. Southwark/Lambeth), where services can feel fragmented.

The need for joined-up working across boroughs and hospital trusts was emphasised.

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6. Inclusion & Underrepresented Groups

Several groups were identified as needing more targeted engagement:

• Mental health carers
• Ethnic minority carers
• Male carers (who are often underrepresented)
• Young carers
• Working carers

There was a clear call to ensure the strategy does not become “one-size-fits-all.”

In particular:

• Cultural expectations can prevent some carers from seeking support.
• Male carers may be less likely to self-identify.
• Working carers face employment pressures despite recent legislation.

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7. National Pressures on Unpaid Carers

A short presentation was delivered by Matthew McKenzie on national developments affecting carers.

Financial Pressures

• Carer’s Allowance remains one of the lowest benefits of its kind.
• Ongoing overpayment recovery cases have caused distress for many carers.
• Cost-of-living pressures are increasing hardship.
• Many carers are limiting working hours to avoid breaching earnings thresholds.

Service Pressures

• NHS workforce shortages.
• Increasing waiting lists for mental health services.
• Limited psychological support tailored specifically for carers.
• Strain on carers centres due to funding pressures.

Policy Gaps

• No current overarching national carers strategy.
• Low awareness of carers’ rights under the Care Act 2014.
• Postcode variation in support.
• Inconsistent carer involvement in service design.

It was highlighted that unpaid care is estimated nationally at around £160 billion annually demonstrating the enormous economic value of carers’ contribution.

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8. Key Strategic Themes Emerging

Across all discussions, several recurring themes emerged:

1. Carers must see outcomes from engagement.
2. Safeguarding must involve follow-up and accountability.
3. Training for social workers must include trauma-informed and neurodiversity awareness.
4. Hospital discharge pathways need clarity and consistency.
5. Carers need better communication and joined-up systems.
6. Underrepresented groups require targeted inclusion.
7. Engagement must move beyond consultation into meaningful co-production.

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