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South London Mental Health Carers Forum Update – July 2026

By Matthew McKenzie – Chair of the South London MH carers forum

Another month has passed, and I would like to thank everyone who joined our South London Mental Health Carers Forum. It was fantastic to welcome carers, NHS professionals, voluntary sector organisations and local authority representatives from across South London to discuss issues affecting unpaid mental health carers.

As always, the forum provides a safe place where carers can raise concerns directly with decision makers, hear about new developments, share experiences and help shape improvements across mental health services.

For those who were unable to attend, here is a detailed summary of the meeting.

Welcome and introductions

We welcomed carers from across Lewisham, Lambeth, Southwark, Croydon, Richmond and surrounding boroughs, alongside representatives from:

  • Lewisham GP Mental Health Transformation
  • Carers First Croydon
  • Carers Hub Lambeth
  • POWHER (NHS complaints advocacy)
  • Southwark Council
  • Carers with lived experience
  • Voluntary sector organisations

The strength of the forum continues to be its mix of lived experience alongside professionals willing to listen directly to carers.

One particularly encouraging update at the beginning of the meeting was confirmation that South London and Maudsley NHS Foundation Trust (SLaM) is reviewing its Triangle of Care work and wishes to involve carers more closely in that process.

This is extremely important because Triangle of Care is one of the main national frameworks that helps mental health services work better with families and unpaid carers.

Lewisham Mental Health Transformation Update

Our first guest speaker was Dr Anna Robinson, GP Clinical Lead for Mental Health Transformation in Lewisham.

Dr Robinson explained that one of her main priorities is improving communication between GP practices and specialist mental health services. She recognised that many of the difficulties experienced by carers occur during transitions, particularly when someone moves between primary care and secondary mental health services. To help address this, she has already begun bringing together GP leaders and mental health professionals, creating opportunities for closer collaboration and establishing direct communication channels, including a new WhatsApp group linking GPs with mental health clinicians so concerns can be discussed more rapidly. She hopes these improvements will lead to better referral pathways, clearer discharge arrangements and more consistent communication between services.

Improving communication between GPs and mental health services

One of the biggest priorities is improving communication between GP practices and specialist mental health services.

Many carers know only too well how stressful it can be when someone is discharged from secondary mental health care back to their GP.

Communication delays often create uncertainty about:

  • medication
  • follow-up care
  • relapse planning
  • physical health monitoring
  • who is actually responsible for ongoing care

To improve this, Lewisham has already begun bringing together GPs and mental health clinicians, including establishing direct communication channels so problems can be discussed much more quickly.

This was welcomed by carers, although many explained there remains considerable work to do.

Carers’ biggest concern: discharge back to GPs

This became the largest discussion of the afternoon.

Many carers expressed anxiety about people with severe mental illness being discharged from community mental health teams back to primary care.

Some of the concerns raised included:

  • GPs may not know the patient as well as specialist teams.
  • Carers worry relapses may not be identified quickly enough.
  • Missed appointments are sometimes an early warning sign rather than a sign that someone is well.
  • Some medications require specialist monitoring.
  • Communication between services is still inconsistent.

One carer explained that if someone experiencing psychosis fails to attend appointments, it should trigger concern rather than assumptions that everything is fine.

Another highlighted that patients can sometimes cancel appointments themselves, meaning clinicians may never realise there is actually a developing crisis.

Dr Robinson acknowledged these concerns and confirmed they are exactly the type of issues she wishes to improve through stronger collaboration between GP practices and specialist services.

Early identification of mental illness in schools

Another important discussion focused on children and young people.

One parent shared how concerns about their child’s mental health had been dismissed at school months before a serious psychotic episode eventually occurred.

This led to discussion about whether all school staff should receive training to recognise early signs of serious mental illness as part of safeguarding training.

Dr Robinson explained that Lewisham is expanding mental health support teams in schools and is also developing alternative services for young people because traditional CAMHS services remain under enormous pressure.

The discussion highlighted how earlier recognition may prevent future crises for some young people.

Universal Care Plans and identifying carers

During the discussion I raised the growing use of the Universal Care Plan (UCP) across London.

One area we discussed was whether GP surgeries are identifying unpaid carers more effectively.

Many carers are still not recorded as carers within GP systems, meaning they may miss out on:

  • health checks
  • vaccinations
  • support services
  • referrals
  • carers’ information

Dr Robinson confirmed GP systems can record carers through coding, but acknowledged this often depends upon carers identifying themselves.

This remains an important challenge because many people caring for relatives still do not think of themselves as “carers.”

Better identification continues to be essential if carers are to receive the support they deserve.

The discussion also broadened into medication safety, the role of GPs in supporting people with long-term mental health conditions and the identification of unpaid carers within GP practices. A carer shared her own lived experience of being misdiagnosed and suffering severe adverse reactions to medication before eventually receiving the correct diagnosis and treatment. Dr Robinson acknowledged that medication can sometimes initially worsen symptoms and stressed the importance of clinicians discussing potential side effects openly with patients.

As I raised questions about the rollout of Universal Care Plans and whether GP surgeries are preparing to identify carers more effectively through SNOMED coding and improved care planning. Dr Robinson explained that GP systems can record carers, although this often depends upon carers identifying themselves, and recognised that many people providing substantial care still do not see themselves as carers. The discussion reinforced the importance of improving carer identification, strengthening communication between services and ensuring carers are recognised as genuine partners in care rather than remaining invisible within the healthcare system

Carers First Croydon

Our second presentation came from Carers First, the organisation delivering carers’ services across Croydon.

Jessica and Toby introduced their service and explained how they are developing support specifically for unpaid carers, including those caring for someone with mental illness.

Although their service supports all carers, they recognised that mental health carers often experience unique challenges.

These include:

  • confidentiality barriers
  • crisis situations
  • unpredictable relapses
  • emotional exhaustion
  • isolation
  • uncertainty around care planning

Their presentation showed a genuine understanding of the pressures faced by mental health carers.

I agree. For a blog, that section reads more like meeting notes than an article. Here’s a much smoother narrative version that still captures the main points without relying on long bullet lists.

Carers First Croydon: Supporting Carers Before Crisis

The organisation commissioned by Croydon Council to provide support for unpaid carers across the borough. Jessica and Toby introduced the service and explained how they are working to ensure carers receive support much earlier in their caring journey, rather than only when they reach crisis point. Although the organisation supports carers of all ages and caring situations, they recognised that those caring for someone with mental ill health often face unique challenges, including emotional exhaustion, confidentiality issues, unpredictable relapses and the constant uncertainty that can accompany serious mental illness.

A key message throughout the presentation was that support for carers needs to be holistic. Carers First offers statutory carers assessments, practical advice, emotional support, peer support and wellbeing activities, but these conversations extend far beyond simply discussing the caring role. Staff work with carers to understand the wider impact that caring has on everyday life, including issues such as employment, finances, poor sleep, housing difficulties, physical health and emotional wellbeing. The aim is to identify the pressures that make caring more difficult and then work alongside carers to find practical solutions, whether through grants, referrals to other organisations, respite opportunities or local wellbeing services.

The presenters emphasised that many carers wait too long before asking for help, often believing they should simply cope on their own. By the time support is requested, carers may already be physically and emotionally exhausted. Carers First hopes to change this by encouraging earlier referrals from GPs, mental health services and carers themselves, allowing support to be put in place before problems become overwhelming. The earlier carers receive advice and practical assistance, the more likely they are to maintain both their own wellbeing and their ability to continue caring.

There was also a strong focus on carers’ own health and wellbeing. The presenters spoke about activities such as carers cafés, Qigong sessions, volunteering opportunities and wellbeing programmes, not simply as recreational activities, but as an essential part of sustaining carers over the long term. One particularly powerful message from the presentation was that self-care should never be viewed as a luxury or something to feel guilty about. Instead, looking after carers is fundamental to maintaining safe, sustainable caring relationships. By supporting carers emotionally, socially and practically, organisations like Carers First help ensure that carers themselves remain healthy enough to continue supporting the people who rely upon them.

Southwark Council Engagement: Safeguarding Review

Later in the meeting we welcomed representatives from Southwark Council, who attended to discuss the council’s current review of safeguarding arrangements and, importantly, to hear directly from carers about their experiences. The discussion recognised that safeguarding is not simply about responding to abuse or neglect, but about ensuring that people with mental health needs receive safe, person-centred care while families and carers are appropriately involved throughout the process.

The review aims to strengthen safeguarding by making it:

  • More consistent across services.
  • More proportionate to individual circumstances.
  • More person-centred and focused on outcomes.
  • Better at involving families and carers where appropriate.
  • More responsive to concerns raised by people with lived experience.

Council representatives emphasised that this was not simply a consultation exercise but an opportunity for carers to genuinely influence how safeguarding develops in Southwark. Those attending the forum were encouraged to continue sharing their experiences so that future improvements are informed by the realities of supporting someone with mental illness.

Questions and discussion

The discussion that followed highlighted a number of recurring themes experienced by carers across South London.

Several carers explained that they often recognise subtle changes in a person’s behaviour weeks before professionals become aware that something is wrong. As the people who know their relative best, carers felt that their observations should be taken more seriously when concerns are first raised, particularly where there is evidence of deteriorating mental health or increasing risks.

Questions were also raised around how safeguarding concerns are assessed and whether professionals always communicate effectively with families once a concern has been reported. Some carers described occasions where they were uncertain about what action had been taken, what the next steps were, or whether their concerns had been fully understood.

There was also discussion about balancing confidentiality with safeguarding responsibilities. Whilst recognising the importance of protecting an individual’s rights, carers emphasised that excluding families from conversations can sometimes mean valuable information about risks, changes in behaviour or previous crises is overlooked. Many felt that better communication with carers could strengthen safeguarding rather than compromise it.

Another important point raised was that safeguarding should not only focus on responding after a crisis has occurred. Instead, carers felt services should recognise early warning signs, intervene sooner where possible and view carers as partners in identifying emerging risks before situations escalate.

The representatives welcomed these reflections and acknowledged the value of hearing directly from lived experience. They encouraged carers to continue engaging with the review process so that future safeguarding arrangements better reflect the realities faced by families supporting someone with serious mental illness.

Lambeth Update

We were also pleased to receive an update from Karen Ibrahim, Mental Health Carers Coordinator at Carers Hub Lambeth, who shared a number of developments taking place across the borough to improve support for unpaid carers.

Karen explained that Carers Hub continues to expand its offer to carers, with several new initiatives now available. One of the most significant developments is the introduction of the Lambeth Carers Card, which is intended to help carers identify themselves more easily when accessing services and encourage wider recognition of the vital role unpaid carers play. Alongside this, Carers Hub has strengthened its welfare benefits support, enabling carers to access specialist advice on benefits, financial entitlements and income maximisation, an increasingly important service given the financial pressures many carers continue to face.

Another important area of work has been raising awareness of carers throughout local services. Karen described the continued delivery of carers awareness training for professionals, helping frontline staff better understand carers’ rights, the challenges families experience and why carers should be recognised as partners in care rather than simply relatives accompanying patients. She also highlighted the ongoing development of the Lambeth Mental Health Carers Group, which continues to provide carers with opportunities to share experiences, influence local services and receive peer support from others who understand the realities of caring for someone living with mental illness.

Questions and discussion

The discussion then moved towards some of the more difficult experiences carers continue to face within inpatient mental health services.

One issue raised was the safety of inpatient wards, with concerns expressed about incidents involving patient-on-patient violence and the emotional impact these situations can have on both patients and their families. Carers discussed the importance of ensuring that safety concerns are taken seriously and that families are kept appropriately informed when incidents occur.

Questions were also asked about how carers’ concerns are escalated when they believe someone is at risk or when communication between staff and families begins to break down. Karen acknowledged that these situations can be extremely distressing for carers and stressed the importance of maintaining open communication between inpatient teams, community services and families wherever possible.

The discussion also reinforced the wider importance of involving carers throughout a person’s mental health journey, rather than only contacting families during periods of crisis. Participants agreed that carers often hold valuable knowledge about changes in behaviour, early warning signs and previous experiences of relapse, and that this lived experience should be recognised as an important contribution to safe and effective care.

Karen thanked carers for continuing to share their experiences and encouraged everyone to remain engaged with Carers Hub Lambeth, emphasising that feedback from carers plays a vital role in helping improve local mental health services and ensuring carers’ voices continue to influence future developments.

Looking ahead

Our forum will continue bringing together carers, NHS services, local authorities and voluntary organisations to improve mental health support across South London.

If you are an unpaid mental health carer living in South London, you are always welcome to join us.

Together we can continue raising carers’ voices, influencing services and helping ensure that carers are recognised not simply as visitors to mental health services, but as valued partners in care.

Triangle of Care Community Meeting: July 2026 update

By Matthew McKenzie – Triangle of Care – Community group chair

Putting Carers at the Centre of Care

The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.

One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.

Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.

Progress Across the Triangle of Care Programme

Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.

Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.

Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.

The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.

Advancing Equality Through the Patient and Carer Race Equality Framework

A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.

PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.

The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.

Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.

Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.

Confidentiality, Information Sharing and Carer Inclusion

Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.

Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.

Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.

Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.

Triangle of Care Principles Within Acute Services

The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.

Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.

Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.

Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.

Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.

Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.

Looking Ahead

The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.

Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.

Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.

The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.

Carers Week 2026 Round-Up

By Matthew McKenzie – Carer, Campaigner, Author and Speaker

5 June 2026 – Supporting Kent County Council’s Carer Awareness Campaign

Although not officially part of Carers Week, my activities with Kent County Council formed an important part of my ongoing commitment to raising awareness of unpaid carers. I supported the county’s long-term carer awareness campaign by taking part in filming designed to help train council staff to better recognise and support carers.

I also discussed future opportunities to speak at Kent County Council carer groups and continued promoting my own support groups across the county. It was encouraging to see local government investing in carer awareness and recognising the importance of ensuring carers are identified, valued and supported within their communities.

9 June 2026 – Developed Video promotion for Carers Week 2026

I did my bit to raise awareness of Carers Week 2026 via a video I developed, which you can see below.

8 June 2026 – Carers Week Stall at St George’s University Hospital

Carers Week officially began with a rewarding day at St George’s University Hospital, where I hosted a Carers UK information stall. The event provided an opportunity to engage directly with unpaid carers, patients, hospital staff and visitors, sharing information about the support available to carers both locally and nationally.

I was particularly pleased to see the hospital’s dedicated carers information board, which demonstrated a clear commitment to recognising and supporting unpaid carers. Throughout the day, I spoke with many people who were caring for family members and helped raise awareness of carers’ rights, available services and the importance of seeking support. It was a positive start to Carers Week and highlighted the vital role healthcare settings can play in identifying and supporting carers.

10 June 2026 – Ealing Carers Week Celebration at Perceval House

On 10 June, I attended the Carers Week Celebration 2026 at Perceval House in Ealing, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council. As someone who supports both of my elderly parents, I understand first-hand the rewards and challenges of caring. During the event, I had the privilege of hosting a Carers UK information stall while also attending as a carer, poet and author.

The day brought together carers, charities, community organisations, health professionals and council representatives in a welcoming and supportive environment.

Carers had access to information, advice and wellbeing activities, including complimentary refreshments, free manicures provided by Uxbridge College students, artwork exhibitions and opportunities to connect with others who understand the caring journey. The event served as a powerful reminder that carers matter, their voices are important and they should never feel alone.

You can find out more about the event below from Ealing Local Community news

Celebrating carers across the borough

10 June 2026 – Carers Week Parliamentary Drop-In Event, Westminster

Later that day, I attended the Carers Week Parliamentary Drop-In Event at Portcullis House, Westminster. The event brought together unpaid carers, carers’ organisations, MPs and Peers to discuss the realities of caring and the support carers need.

Designed as a speed-networking event, it offered an important platform for carers to share their experiences directly with policymakers and raise awareness of both the immense contribution carers make and the challenges they face. It was encouraging to see parliamentarians engaging with carers and supporter organisations, demonstrating a growing recognition of the need for stronger policies and greater support for unpaid carers across the country.

11 June 2026 – East Sussex Carers Voices Event, East Dean Village Hall

As part of Carers Week, I travelled to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, NHS representatives, local authority leaders, health professionals, carers’ organisations and community groups to discuss how support for carers can be improved.

Hosted by Dr Neil Churchill, Chair of Care for the Carers along with Jennifer Twist CEO of Care For The Carers, the day focused on listening to carers’ experiences and ensuring their voices were heard by decision-makers.

I was honoured to contribute to these discussions and to share insights from my own caring journey. The event demonstrated the value of bringing carers and professionals together to shape services and create positive change for unpaid carers across East Sussex.

12 June 2026 – Speaking at the Cygnet National Carers Event

On 12 June, I had the privilege of speaking at the Cygnet National Carers Event in London as Cygnet’s PCREF Carer Lead, Carer Network Ambassador and carer author. The event brought together carers, healthcare professionals and sector leaders to celebrate carers and discuss the support they need. I shared my experiences as a lifelong carer and highlighted the importance of recognising carers as equal partners in care.

It was inspiring to hear from a diverse range of speakers, including experts by experience, researchers, advocates and service leaders, all united by a shared commitment to improving outcomes for carers. The event reinforced the importance of lived experience in shaping services and ensuring carers’ voices remain central to policy and practice.

13 June 2026 – Carers Community and Support Day at Wells Park Practice

I concluded Carers Week 2026 by hosting a carers information stall alongside Wendy (who is also a devoted carer campaigner at our Lewisham group) at Wells Park Practice during their Carers Community and Support Day.

The event celebrated carers within the local community and provided an opportunity for unpaid carers to access information, advice and support in a relaxed and welcoming environment.

Throughout the afternoon, I spoke with carers about the challenges they face and the services available to help them. The event also highlighted the importance of building a carer-friendly community by recognising carers, understanding the realities of caring and empowering carers to live fulfilling lives. It was a fitting way to end a busy and rewarding week dedicated to championing carers and raising awareness of their invaluable contribution to society.

Reflection

Carers Week 2026 was an incredibly busy and meaningful week, providing opportunities to raise awareness, influence decision-makers, support carers directly and celebrate the extraordinary contribution that unpaid carers make every day.

From hospitals and GP surgeries to Parliament, local authorities and national conferences, the message remained the same: carers are essential, carers deserve recognition and carers must be supported. I am proud to have contributed to so many events throughout the week and remain committed to ensuring that carers’ voices continue to be heard long after Carers Week has ended.

CarersWeek2026, #CarersWeek, #UnpaidCarers, #CarerAwareness, #SupportCarers, #CarersMatter, #NHS, #MentalHealth, #HealthAndSocialCare

National Ethnic mental health Carer Forum : April Update 2026

If you weren’t able to join us for this month’s online forum, you missed a deeply insightful session packed with research updates and honest conversations. As a carer myself, I know how hard it is to find time for these meetings, so I’ve put together this expanded summary to keep you in the loop on the vital work being done for our community.

Meeting Agenda

  • Welcome and Intro: The role of the Patient Care Race Equality Framework (PCREF).
  • Speaker 1: Brenda Hayaka (King’s College London): Findings on ethnic inequalities in healthcare and the new “Interception” study.
  • Q&A Session: Addressing dementia stigma, medication, and language barriers.
  • Spirituality & Faith: Insights from Tuulia Castledine (Chaplain at SWLSTG) on recovery and holistic care.
  • Speaker 2: Becky Forster (University of Southampton): Supporting carers facing harmful or upsetting behaviors.
  • Local Advocacy: Healthwatch Croydon’s role in gathering carer feedback.
  • Closing: “Rooted and Growing” (A PCREF poem).

Key Speaker: Brenda Hayaka – The Interception Project

Brenda shared findings from her previous work on ethnic inequalities and introduced her new study on Multiple Long-Term Conditions (MLTCs).

Brenda Hayaka opened her keynote by sharing the heart behind her work on ethnic inequalities in healthcare. Drawing on her previous research, she described how minoritised ethnic patients and their carers often face significant challenges navigating multiple long-term conditions (MLTCs) with little support or recognition. She emphasized that while global interventions exist for conditions like diabetes and depression, there is a notable gap in UK-based research specifically addressing MLTCs in minoritised communities. This “major evidence gap” became the driving force behind her current study, The Interception Project.

What the Research Shows:

  • Systemic Disadvantage: Minoritized ethnic groups are disadvantaged from the development to the management of multiple conditions.
  • Poor Continuity of Care: Many experience poor therapeutic relationships with practitioners.
  • The UK Evidence Gap: While interventions for depression and diabetes exist globally, Brenda found zero studies specifically targeting MLTCs for minoritized groups within the UK healthcare system.

The “Interception” Study:

The Interception Project uses a creative and collaborative method called journey mapping to trace the lived experiences of patients and unpaid carers. Brenda explained that this approach goes beyond merely collecting data: it seeks to identify the pathways people take when seeking help, the barriers they encounter, and the moments where the healthcare system fails them. By listening deeply and reflecting these experiences back to communities, the research provides actionable insights into improving care quality and equity. The study is expanding beyond London to include Coventry and Manchester, recognizing that every community has unique strengths, challenges, and solutions.

Brenda highlighted that a central aim of the project is to co-create actionable recommendations with communities. These recommendations are intended for NHS leaders, commissioners, and policymakers, ensuring that the voices of carers and patients directly inform service design and delivery. She also spoke about the role of trusted community leaders in building access and overcoming barriers such as language differences, mistrust of institutions, and cultural stigma around certain health conditions. Faith communities, she noted, can play a crucial role not only as support networks for participants but also as partners in research, data collection, and advocacy for change.

Throughout her presentation, Brenda emphasized that understanding the journey of carers and patients requires attention to both systemic and relational factors. Minoritised ethnic groups often experience disadvantages in developing and managing multiple conditions, and poor continuity of care can weaken therapeutic relationships with practitioners. By documenting these experiences in detail, the Interception Project aims to fill the evidence gap and provide a roadmap for more equitable, culturally sensitive care. Brenda closed her keynote by reminding attendees that meaningful equity in healthcare begins when previously invisible experiences are recognized and acted upon—a call to transform insight into change.

Spirituality in Care: Forum Introduction by Matthew McKenze

I had the honor of opening the spirituality segment of the forum, emphasizing the vital role that faith and cultural practices play in supporting carers and patients from minoritised ethnic communities. I framed the discussion around the idea that mental health care cannot be fully effective unless it recognizes the whole person, including their spiritual and cultural identity. I highlighted that carers often draw strength, resilience, and meaning from their faith, and that this dimension is frequently overlooked in traditional mental health services.

I encouraged participants to consider spirituality not as an abstract concept, but as a tangible resource that can inform recovery, foster belonging, and enhance coping strategies. By acknowledging spiritual needs, mental health providers can build trust with communities that have historically experienced marginalization or misunderstanding within healthcare systems. I also set the tone for an open and reflective conversation, inviting attendees to share experiences, insights, and challenges related to integrating faith and mental health support.

By positioning spirituality as both a personal and systemic consideration, the forum aimed to explore how services can better engage with faith perspectives in a respectful, inclusive, and practical way. This introduction laid the groundwork for Tuulia Castledine’s keynote, which delved deeper into the spiritual tools and frameworks that support carers and patients in their mental health journeys.

Spirituality in Care: Insights from Tuulia Castledine (SWLSTG)

We were joined by Tula, a Chaplain from South West London and St George’s (SWLSTG), who led a vital discussion on the spiritual dimension of mental health.

Tuulia highlighted that for many carers and patients, faith is not just a personal practice but a framework through which they make sense of mental health crises. Spirituality often provides a lens for understanding why challenges occur and offers a source of hope, helping individuals navigate uncertainty with resilience.

Beyond offering meaning, Tuulia explained that spirituality can serve as a practical tool in recovery. It provides a “language for recovery” that allows carers and patients to express experiences and emotions that might otherwise be difficult to articulate. This sense of connection fosters belonging and strengthens the psychological resources people draw upon when coping with mental health challenges.

Tuulia also stressed the importance of services adopting what she called “spiritual curiosity.” Mental health professionals are encouraged to engage openly with faith perspectives rather than making assumptions or ignoring them. By integrating spirituality into holistic, person-centered care, services can better meet the needs of minoritised ethnic communities.

Finally, Tuulia highlighted a critical concern: when services fail to acknowledge faith, they risk deepening the mistrust that many minority communities feel toward mental health providers. Recognizing and valuing spiritual needs, she emphasized, is not just compassionate—it is a crucial component of equitable care, fostering trust, understanding, and more effective therapeutic relationships.

Summing up Tuulia’s talk

  • Making Sense of Illness: For many, faith is how they make sense of why a crisis is happening and where they can find hope.
  • A Tool for Recovery: Spirituality provides a “language for recovery” and can build resilience and a sense of belonging.
  • Moving Beyond Assumptions: Tula emphasized that services need to show “spiritual curiosity” and include faith as part of holistic, person-centered care.
  • The “Mistrust” Gap: When services ignore faith, it can deepen the mistrust minority communities feel toward mental health providers.

Carer Voice: Questions & Feedback

The Q&A session was one of the most powerful segments of the forum, offering an unfiltered view of the real-world barriers faced by carers and minoritised ethnic communities. Participants shared candid experiences, highlighting gaps in current mental health support and pressing for practical solutions.

A professional opened the discussion by addressing the critical issue of language and access. She pointed out that many research projects and healthcare initiatives fail because they do not allocate adequate resources for language interpretation or accessibility for disabled individuals. Without these provisions, vital services and studies inadvertently exclude those who may benefit most, leaving carers and patients marginalized.

A carer contributed a particularly thought-provoking critique regarding medication versus conversation. He challenged the system on why Black men are often prescribed stronger medication for longer periods rather than being offered meaningful dialogue and psychosocial support. This raised an important conversation about the need for culturally sensitive approaches to treatment that value listening, understanding, and relationship-building alongside pharmacological intervention.

The unpaid carer also highlighted the challenge of dementia stigma within older generations of minoritised communities. He described how deeply ingrained cultural perceptions can make it difficult for families to seek early support or even acknowledge the condition, creating additional stress for carers. The discussion emphasized that tackling stigma requires both education and culturally attuned engagement, alongside support networks that respect the values and experiences of carers and patients.

A mental health professional from another mental health NHS trust added a vital perspective on community engagement and trust-building. He emphasized that carers often encounter inconsistent communication from services and a lack of culturally informed support, which can leave families feeling isolated and unsupported. He urged healthcare providers to work more closely with community leaders, faith groups, and carers themselves to co-design services that truly respond to the specific needs of minoritised ethnic communities.

Overall, the feedback session underscored that systemic improvements must be informed by the lived experiences of carers. Their insights illuminated the gaps between policy, research, and practical care, reminding the forum that real change is rooted in listening to and amplifying these voices.

Support for Carers in Crisis

Becky Forster introduced a deeply important new study funded by Marie Curie, focusing on carers who find themselves in extremely challenging and sometimes frightening situations. The research aims to better understand the experiences of carers who have faced harmful, aggressive, or abusive behaviors from the person they care for, particularly at the end of life. Becky emphasized that these situations are often overlooked in traditional guidance, leaving carers without the support or strategies they need to cope safely and effectively.

The study seeks to gather real-life experiences from carers, acknowledging that their insights are invaluable in shaping practical and compassionate guidance for healthcare providers. Becky explained that the goal is not only to document these difficult experiences but also to translate them into actionable tools and recommendations for the NHS, ensuring that carers receive timely support, protection, and training when dealing with complex end-of-life care scenarios. By centering the voices of those who have lived through these crises, the project hopes to reduce isolation, increase safety, and enhance the wellbeing of carers facing some of the most emotionally and physically demanding circumstances.

Becky encouraged attendees to participate and share their stories, reassuring them that contributions would remain confidential and that their experiences could directly influence policy and practice. This initiative highlighted the critical need for systemic recognition of carers’ emotional and practical needs, ensuring that they are not left to navigate trauma and stress alone. The session reinforced that understanding, guidance, and compassionate support are essential for carers’ resilience and for providing safe, dignified care to those at the end of life.

Croydon Healthwatch

We concluded the forum with an important reminder from Anna of Healthwatch Croydon, who emphasized that anyone in England has the right to provide anonymous feedback on their care. Anna highlighted that this is more than a formal process, it is a powerful tool for carers, patients, and communities to have their voices heard. By sharing experiences of both excellent and inadequate care, individuals can directly influence how services are shaped, highlight gaps in provision, and push for improvements where they are most needed.

Anna also underscored that feedback plays a crucial role in holding policymakers and healthcare leaders accountable. When carers and patients report their experiences, patterns of inequality, or systemic barriers, it creates evidence that decision-makers cannot ignore. This feedback is particularly vital for minoritised ethnic communities, where historical mistrust and underrepresentation have often left issues unaddressed. She encouraged all attendees to see feedback not as a bureaucratic exercise, but as an instrument of empowerment, helping to drive change at both local and national levels.

I closed the session with my poem “Rooted and Growing,” celebrating that we don’t have to lose our identity to get the care we deserve.

Matthew McKenzie

Mental Health Carer & Forum Chair

Our Stories Matter – Poem by Matthew McKenzie #PCREF

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.

🎥 Watch “Our Stories Matter” here:
https://www.youtube.com/watch?v=_sVie4YSdbc

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.

National Ethnic mental health Carer Forum : March Update 2026

Chaired by Matthew McKenzie – Carer Activist

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.

Nilaari delivering hope

Q&A Section : From Evidence to Frustration

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.

Reflections from King’s Mental Health Fair 2025 – A Carer’s Perspective

By Carer Activist – Matthew McKenzie

Today, I had the privilege of being part of King’s College Hospital NHS Foundation Trust’s Mental Health Fair, held on Thursday 2nd October, in recognition of World Mental Health Day 2025.

The event brought together a wide range of organisations and community groups working tirelessly to support the mental health and wellbeing of patients, families, and carers.

Why carers need to be at the heart of mental health conversations

As someone who has cared for a loved one experiencing mental health challenges, I know firsthand the importance of recognising and supporting carers through the groups i run.

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South West London Mental Health carers group update for June 2025

A Space to Share, a Space to Be Heard

The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.

Peer Support: Insights from Experience

Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.

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National Triangle of Care Community meeting – March 2025

By Triangle of Care community chair Matthew McKenzie FRSA BEM

For the month of March, unpaid carers, NHS professionals, and key stakeholders came together for another Triangle of Care National Community Meeting, which is a powerful space of collaboration, reflection, and shared purpose. Chaired by Matthew, the meeting spotlighted significant developments in carer engagement, mental health service standards, and equity frameworks across the NHS.

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