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.
By Matthew McKenzie – Chair of Cancer Caregiver group
Supporting a loved one through a cancer diagnosis is a journey that often goes unseen. Family members, partners, friends, and other caregivers provide emotional support, help navigate appointments, and stand alongside patients during one of the most challenging periods of their lives. Yet their experiences are rarely heard.
Researchers at University College London (UCL) are inviting people who have supported someone with endometrial (womb) cancer to take part in a research study exploring the cancer diagnostic journey. The study is particularly interested in hearing from people who have supported women experiencing economic hardship, as well as Black women, who are more likely to be diagnosed with endometrial cancer at a later stage, when treatment can be more difficult.
Your Story Matters
Every caregiver’s experience provides valuable insight into the challenges people face before, during, and after a cancer diagnosis. By sharing your story, you can help researchers better understand the barriers to timely diagnosis and identify ways to improve support for future patients and their families.
Written by Matthew McKenzie, Speaker, Carer, Campaigner and Poet
As part of Carers Week 2026, I had the privilege of travelling 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, carers’ organisations, NHS representatives, local authority leaders, health professionals, community groups and carers from across East Sussex to discuss the realities of caring and identify ways to improve support for unpaid carers.
The event was hosted by Dr Neil Churchill, Chair of Care for the Carers, who guided the day’s discussions and emphasised the vital role carers play in society. Throughout the day, carers shared their personal stories, experiences and recommendations directly with decision-makers and service providers.
On Wednesday 3 June 2026, colleagues from all eight London Mental Health Trusts, alongside carers, service users, community organisations, researchers, regulators and system leaders, gathered at ISH Venues in central London for the Pan London Patient and Carer Race Equality Framework (PCREF) Conference.
Chaired by Erica deti from North East London NHS Foundation Trust (NELFT), the conference provided a unique opportunity to showcase progress, share learning and strengthen London’s collective commitment to race equity within mental health services.
Blog by Ethnic Mental Health Carer forum Chair – Matthew McKenzie
The May 2026 Ethnic Mental Health Carers Forum brought together carers, researchers, clinicians, community leaders, and representatives from mental health organisations across England. Although attendance was smaller than usual, the discussion was rich, honest, and highly informative, covering Mental Health Act reform, carers’ experiences, service inequalities, innovative approaches to care, and new research opportunities.
For those who were unable to attend, this blog provides a comprehensive overview of the meeting, including key presentations, audience questions, responses from speakers, and useful resources shared during the session.
Opening Remarks
As the chair, I welcomed attendees and outlined the agenda. The meeting focused on following:
Mental Health Act research and reform
Carers’ experiences supporting loved ones through detention
Findings from a major East Sussex carers research project
Resources for carers under the Mental Health Act
Electronic Health Records and future developments
Wider discussions on racial trauma, inequalities, and service improvement
The meeting also provided opportunities for networking, sharing lived experiences, and highlighting innovative projects happening across the country.
Research Study: Supporting a Loved One Through Mental Health Detention
Dr Maeve Conneely from University College London opened the meeting with a presentation on a new research study exploring the experiences of people who have been assessed or detained under the Mental Health Act, as well as the experiences of family members and carers who supported them through that process. The study has been commissioned as part of the wider programme of Mental Health Act reform and aims to understand how the current “Nearest Relative” provisions operate in practice before changes are introduced under the new legislation.
Dr Conneely explained that researchers are particularly interested in hearing from carers who were involved in supporting a loved one but who were not formally recognised as the “Nearest Relative” under the existing legal framework. She highlighted that these experiences are especially important because they can reveal where carers have been excluded from decision-making, denied access to information, or prevented from contributing to assessments despite playing a significant role in supporting the individual concerned. The study is open to anyone aged 16 or over who has direct experience of Mental Health Act assessments, detentions, Community Treatment Orders, holding powers, or related interventions, whether as a patient or as a supporter.
The research is linked to ongoing reforms of the Mental Health Act and seeks to understand how the “Nearest Relative” provisions currently operate before changes are implemented.
Who Can Take Part?
The study is looking for:
People who have been detained under the Mental Health Act
Family members and carers who supported someone during detention or assessment
Individuals who should have been involved as a nearest relative but were not
Anyone aged 16 or over with relevant experience
Interviews are conducted online and participants receive a £30 shopping voucher as a thank-you for their time.
Key Question from Participants
Q: Does the study include situations where someone should have been involved but wasn’t?
Response: Yes. Researchers are particularly interested in understanding experiences where carers or family members were excluded from decision-making processes despite playing a significant caring role.
Another Important Question
Q: Do carers need permission from the person who was detained before participating?
Response: No. Carers are sharing their own experiences and therefore only need to provide their own consent.
Discussion Themes
Participants highlighted:
Long-standing inequalities affecting Black communities under the Mental Health Act.
The overuse of psychiatric labels without sufficient exploration of trauma.
The need to understand why some individuals receive significantly different experiences of care, including access to private mental health facilities.
Concerns about trust in mental health services and the lasting impact of poor experiences across generations.
Several carers committed to taking part in the study to ensure lived experience informs future policy.
East Sussex Carers Research Project: What Carers Told Us
Age Angiolini presented findings from a year-long carers-led research project examining the experiences of family carers supporting people with serious mental illness across East Sussex. The study was developed in response to repeated concerns raised by carers at local support meetings and sought to capture their experiences of interacting with mental health services provided by the Sussex Partnership Foundation Trust (SPFT).
Although the research received 71 responses, representing only a proportion of the carers population in the region, the findings revealed a striking consistency in the challenges carers face. The survey explored themes including carers’ involvement in care planning, communication with services, consent and confidentiality, quality of care, crisis support, and priorities for improvement. Among the most significant findings were that 72% of carers reported being only sometimes involved or not involved at all in their loved one’s care, 73% felt services relied too heavily on carers, and 72% said they regularly had to advocate to secure appropriate support. The research concluded that many carers feel undervalued, excluded from decision-making, and left carrying significant responsibilities without adequate recognition or support.
The study gathered responses from carers supporting people with:
Schizophrenia
Bipolar disorder
ADHD
Autism
Complex neurodiverse conditions
Although the sample size was relatively modest, the findings revealed significant and consistent concerns.
Key Findings from the report
Carers Feel Excluded
72% reported being only sometimes involved or not involved at all.
73% felt services relied too heavily on carers.
72% said they had to advocate strongly to secure appropriate care.
Communication Failures
Participants reported poor communication between:
Mental health services
Assessment teams
Social services
Mental health liaison teams
Many carers described communications as inconsistent, unclear, and difficult to navigate.
Consent and Confidentiality
A recurring concern was that confidentiality procedures are often applied rigidly, preventing carers from sharing vital information during crises.
Carers argued that this can actively undermine effective care.
Quality of Care Concerns
The research found:
90% reported insufficient care.
Significant concerns around continuity of care.
A strong desire for dedicated care coordinators.
Widespread frustration with crisis services.
Crisis Support is Not Working
Many carers reported that:
NHS 111 is often inadequate for mental health crises.
A&E is frequently unsuitable for people experiencing mental distress.
Services remain reactive rather than preventative.
Calls for Change
Recommendations included:
Better crisis pathways
Improved coordination between services
More trauma-informed approaches
Greater therapeutic support
Increased family involvement
Better support for neurodiverse individuals
The presentation sparked considerable discussion, with many attendees noting that the findings reflected experiences they had encountered for years.
Carers Speak Out: Frustration, Trauma and the Need for Change
One of the most powerful aspects of the meeting was hearing directly from carers.
Several participants reflected on decades of involvement with mental health services and expressed concern that despite repeated reviews, consultations, and reforms, many of the same issues continue to persist.
Common themes included:
Institutional racism
Poor communication
Exclusion of carers
Over-medicalisation
Lack of trauma-informed care
Inadequate support during crises
A number of attendees emphasised that families often become de facto care coordinators, managing appointments, services, medications, and crises while receiving little support themselves.
One participant observed:
“They plan, medicate and treat. We care. Our worlds don’t meet.”
Others highlighted the impact of racial trauma and the way mental health services can fail to recognise the cultural context of distress.
Open Dialogue: A Different Way Forward?
Ren Reins introduced the concept of Open Dialogue, an internationally recognised approach to mental health care that focuses on relationships, networks, and collaborative conversations.
Open Dialogue aims to:
Bring families and professionals together
Reduce fragmentation between services
Focus on lived experience
Build trust
Improve recovery outcomes
Ren explained that major NHS-funded trials are underway and encouraged carers to learn more about the approach.
The discussion generated significant interest, particularly from attendees looking for alternatives to traditional medical models of care.
Nearest Relative Resources Project
Professor Judy Laing from the University of Bristol provided an update on an innovative project designed to support family members and carers who hold, or may hold, responsibilities under the Mental Health Act’s “Nearest Relative” provisions. Drawing on previous research with carers and mental health professionals, Professor Laing explained that many family members who find themselves in the Nearest Relative role often receive little information, guidance, or emotional support despite carrying significant legal responsibilities. In response, her team secured funding to develop a free, co-produced online resource that helps carers understand their rights, responsibilities, and options when supporting a loved one through mental health assessment, detention, and treatment.
Developed in partnership with carers, family members, mental health professionals, and organisations including Mind, Rethink Mental Illness, and Carers Trust, the website provides practical information, downloadable tools, guidance for conversations with professionals, and resources to help carers look after their own wellbeing. Professor Laing stressed that the project has been shaped directly by the experiences of those who have undertaken the role themselves, ensuring that the guidance reflects the realities and challenges carers face in practice rather than simply explaining legal processes.
The project emerged from research identifying significant gaps in information and support for people carrying out the “Nearest Relative” role.
What Has Been Developed?
The project has created a free online resource containing:
Information about legal rights
Guidance on conversations with professionals
Practical tools for meetings
Support for carers’ wellbeing
Resources explaining upcoming legal changes
The materials have been co-produced with carers and family members.
Questions Raised
How are diverse communities included?
Participants asked how the project ensures equity and accessibility.
Professor Laing explained that:
People from ethnic minority backgrounds have contributed to development.
Resources are being improved to increase accessibility.
Additional funding is supporting work around inclusion and accessibility.
Translation and alternative formats are being explored.
How is the project promoted?
Discussion focused on ensuring communities are aware of available support rather than resources existing only online.
Professor Laing outlined efforts involving:
Mind
Carers Trust
Mental health services
Local media
Carer forums
How will the new Nominated Person role protect carers who have traditionally been involved in supporting a loved one?
Several participants expressed concern that replacing the Nearest Relative role could unintentionally weaken the involvement of family members who have historically provided substantial support during periods of mental ill-health. Questions were raised about situations where a person may choose someone other than their primary carer to act as their Nominated Person, potentially reducing carers’ ability to access information or participate in key decisions. Professor Laing acknowledged that these concerns have been raised by many carers and explained that the practical details of how the new system will operate are still being developed. She stressed the importance of carers contributing their experiences to ensure that future guidance recognises the valuable role families often play in supporting recovery and maintaining continuity of care.
What support is available when professionals fail to recognise or understand carers’ legal rights?
Attendees also discussed the reality that many mental health professionals are not always familiar with the legal powers and rights associated with the Nearest Relative role. Participants described situations where carers were excluded from discussions, not informed of important decisions, or felt unable to challenge professional opinions because they lacked confidence in their understanding of the law. In response, Professor Laing highlighted that one of the main objectives of the Bristol resources project is to bridge this knowledge gap by providing practical tools, suggested questions, and clear explanations of carers’ rights. She noted that the project is also developing resources aimed at professionals themselves, with the goal of increasing awareness and ensuring that carers’ legal rights are better understood and respected across mental health services.
Attendees welcomed the commitment to increasing visibility.
Electronic Health Records and Future Developments
Dr Anna De Simoni, an Academic GP and Associate Professor of Primary Care at Queen Mary University of London, presented an early-stage research proposal focused on how electronic health records could be used to better understand and map the social support networks surrounding people living with multiple long-term health conditions.
Dr De Simoni sought direct feedback from carers to help shape the project before a formal funding application is submitted. She explained that while healthcare professionals can usually identify a patient’s next of kin and household members through existing GP records, they often have very limited understanding of the wider support networks that play a vital role in a person’s wellbeing.
These networks may include family members, neighbours, friends, faith groups, community organisations, carers, and others who provide practical and emotional support. The research aims to explore whether technology and electronic health records can help healthcare professionals better recognise these support systems and use that information to improve care planning, reduce unnecessary hospital admissions, and enhance quality of life for people living with complex health conditions.
The discussion generated considerable interest, particularly regarding:
Information sharing
Integration across services
Support for carers
Data protection concerns
Improving continuity of care
Several participants expressed enthusiasm about the potential benefits while also raising questions regarding privacy and access to NHS information.
Questions and Answers from Dr Anna De Simoni’s Presentation
Q: What problem is this research trying to solve? A: Dr De Simoni explained that healthcare professionals often know very little about the wider support network surrounding a patient. While medical records may identify a next of kin or people living in the same household, they rarely capture the full picture of who is actually providing practical, emotional, or day-to-day support. The project aims to better understand these social networks and use that information to improve care planning and patient outcomes.
Q: Who is the research aimed at? A: The initial focus is on people living with multiple long-term health conditions, including illnesses such as COPD and other complex health needs e.g mental health. The project seeks to understand how stronger recognition of support networks could improve quality of life, reduce hospital admissions, and support people to remain independent for longer.
Q: How would patients contribute information about their support network? A: The proposal includes the use of a Universal Care Plan through the NHS App. Patients would be able to enter information themselves about what matters to them, who supports them, how they prefer to be treated, and what should happen if their health deteriorates. This information could then be viewed and updated by relevant healthcare professionals.
Q: What role could carers play within the proposed system? A: Participants highlighted that carers often provide the majority of practical support but are frequently invisible within healthcare systems. The proposed approach could make carers more visible by helping professionals understand who is involved in supporting a patient and what role they play in maintaining wellbeing and independence.
Q: How will patient confidentiality and data protection be managed? A: Concerns were raised about privacy and the security of NHS data. Dr De Simoni explained that information governance, GDPR compliance, and data protection would be central to the project. Specialists in privacy and information governance would be involved to ensure that any information collected is handled safely, appropriately, and with proper consent.
Key Discussion: Why Are Carers Still Fighting the Same Battles?
A recurring theme throughout the meeting was the sense that many challenges identified today are the same challenges carers raised ten or twenty years ago.
Questions included:
Why are services still fragmented?
Why do carers continue to feel excluded?
Why are communication problems so persistent?
Why is trauma often overlooked?
Why do inequalities remain entrenched?
Participants reflected on whether the issue is primarily one of resources, leadership, service design, or culture.
Many agreed that meaningful change requires carers to remain actively involved in shaping policy and service delivery.
A carers support group recommended during discussion as a source of peer support and shared experience.
Final Reflections
The May 2026 Ethnic Mental Health Carers Forum highlighted both the challenges carers continue to face and the determination across the sector to improve outcomes.
From Mental Health Act reform and carers’ rights to innovative approaches such as Open Dialogue, the meeting demonstrated the importance of bringing together lived experience, research, policy, and practice.
Several speakers reminded attendees that change often begins with carers sharing their stories, participating in research, challenging poor practice, and helping shape future services.
The forum remains an important space where those voices can be heard.
Update by Matthew McKenzie – Chair of South London Mental Health Carers Forum
The South London Mental Health Carers Group met for the month of May for a wide-ranging and thoughtful discussion covering carers’ experiences, mental health support systems, involvement opportunities, and an important research presentation focused on support networks and long-term care.
The group covers areas of Lewisham, Southwark, Lambeth & Croydon, although Mental Health Carers from outside those areas are welcime to attend
The session brought together carers, advocates, involvement leads, and guest speaker Dr Anna De Simone from Queen Mary University of London. As always, the discussion highlighted both the challenges carers continue to face and the value of shared lived experience and peer support.
Opening Discussions: Challenges in Mental Health Care Systems
The meeting began with carers sharing experiences of navigating mental health services for loved ones with complex needs. There was extensive discussion around:
difficulties accessing appropriate placements,
safeguarding concerns,
discharge planning,
lack of continuity between NHS trusts and local authorities,
and ongoing challenges around funding responsibility between different services.
A recurring issue raised was the pressure on inpatient beds and the concern that discharge decisions can sometimes feel driven more by system pressures than by clinical readiness. Carers spoke openly about the emotional impact of repeatedly having to advocate for vulnerable loved ones while navigating fragmented systems.
There was also discussion around the importance of carers being recognised and included in communication and planning processes. Participants highlighted how carers are often the people most aware of deterioration, risks, or safeguarding concerns, and how vital it is that services engage meaningfully with families and informal supporters where appropriate.
Despite frustrations, carers also acknowledged examples of good practice and supportive professionals within mental health services. Several attendees noted that they had seen gradual improvements in carer involvement and listening exercises within parts of South London and Maudsley NHS Foundation Trust (SLAM), particularly in Lambeth.
Updates on Carer Involvement and Support Activities
The group received updates from carers and representatives involved in local mental health engagement work and carers’ organisations.
Carers Week Activities
Karen from Carers Hub Lambeth shared details of upcoming Carers Week activities, including:
outreach events,
wellbeing sessions,
information stalls,
and activities for both adult and young carers.
The events aim to provide carers with opportunities for support, networking, practical advice, and wellbeing activities.
There was also discussion around changes and developments within SLAM involvement structures, including:
continuation of family and carers meetings,
changes to involvement leads,
and ongoing reviews of the involvement register.
Attendees reflected positively on the increasing recognition of carers’ voices in some forums and clinical meetings, while acknowledging that there is still much work to do to ensure consistent involvement across all boroughs and services.
Guest Presentation: Mapping Patient Support Networks
The second half of the meeting focused on a presentation from Dr Anna De Simone, GP and Associate Professor of Primary Care at Queen Mary University of London.
Anna introduced a proposed research project exploring how healthcare systems might better understand and map patients’ support networks using electronic health records and social network tools.
The research proposal focuses particularly on patients with long-term conditions such as COPD (Chronic Obstructive Pulmonary Disease), many of whom also experience multiple additional health conditions and varying levels of social isolation.
The Core Idea
Anna explained that while healthcare professionals can currently access limited information such as next of kin or household members, they often lack a fuller understanding of:
who actually supports the patient,
how reliable that support is,
whether support networks are connected or fragmented,
and how socially isolated a patient may be.
The proposed research would explore whether creating visual “maps” of support networks could help:
improve care planning,
reduce crises,
improve coordination between services,
and enhance patients’ quality of life.
The project would also examine how social prescribing, community services, online support groups, and carers fit into these wider support networks.
Carers’ Feedback on the Research Proposal
The discussion following Anna’s presentation was extremely rich and constructive, with carers offering both enthusiasm and important cautionary perspectives.
Strong Support for the Concept
Many attendees felt the project addressed an important gap in healthcare planning. Several carers spoke about how informal support networks had been essential to helping them or their loved ones survive periods of crisis.
Participants agreed that professionals often underestimate the role played by:
friends,
neighbours,
online communities,
peer groups,
and unpaid carers.
The ability to visualise these networks was seen as potentially valuable for both professionals and patients themselves.
Importance of Non-Traditional Support Networks
A strong theme throughout the discussion was that support does not always come from family.
Some carers explained that family relationships can sometimes be unsafe or abusive, and that support may instead come from trusted friends, neighbours, carers’ groups, or online communities.
The group stressed that any future system should avoid assuming that family automatically equals safety or support.
Online Communities and Digital Support
Participants also highlighted the increasing importance of online support systems.
Several carers explained that:
Zoom groups,
Facebook communities,
online peer support,
and digital communication can provide essential social connection, especially for disabled or isolated people.
One participant noted that online support networks had directly helped them access practical support and reduce isolation when physical mobility was limited.
At the same time, carers cautioned that not everyone has equal access to digital services. Concerns were raised about:
digital exclusion,
accessibility barriers,
lack of digital skills,
and the risk of widening inequalities.
The importance of offering both digital and non-digital forms of support was strongly emphasised.
Privacy, Consent, and Mental Health
Carers also discussed potential challenges around privacy and consent, particularly for people experiencing paranoia or severe mental illness.
Some attendees noted that patients may not always feel comfortable sharing details about their social networks, and that trust and safeguarding would need to be central to any future system.
There was discussion about the delicate balance between:
confidentiality,
safety,
carer involvement,
and patient autonomy.
Role of Social Prescribers
The group generally agreed that social prescribers could play an important role in helping patients map support networks, because they often have more time and a stronger focus on community support than standard GP appointments allow.
However, concerns were raised about long-term funding and sustainability for social prescribing services.
Looking Ahead
Anna thanked the group for their detailed feedback and explained that carers’ insights would help shape the next stage of the research proposal before submission later this year.
There was strong interest from attendees in remaining involved should the project move forward, particularly around future patient and public involvement opportunities.
The meeting once again demonstrated the depth of knowledge, experience, and expertise held by unpaid carers. The discussion reflected not only the challenges carers continue to face, but also the importance of ensuring carers are recognised as essential partners in both healthcare delivery and future research.
I recently attended the “Making Time for Black Mental Health” event hosted by Bella from Think Tenacity Academy CIC at Cottons Caribbean Restaurant in Vauxhall. The event took place on friday 22nd of May 2026
it was a reminder of the importance of safe community spaces that centre Black wellbeing. The event brought together over 100 attendees, including families, carers, advocates, therapists, Plus Healthwatch Southwark, Healthwatch Lambeth, CNWL Talking Therapies Service Westminster, Carers UK, alongside other community organisations supporting mental health awareness and wellbeing.
We were all united around conversations on mental health, lived experience, and reducing stigma within the Black community.
The event was officially opened by Folake Segun, CEO of Healthwatch Lambeth which led on to meaningful conversations, which I have created a video to show highlights of the event.
As a carer advocate, I found the event especially valuable because it highlighted how community-led support can create genuine impact.
The evening included a Q&A session with Black therapists and speakers who openly discussed mental health challenges, cultural understanding, and the importance of representation in support services.
There were also wellness stalls, books, information tables, and opportunities for local organisations to connect directly with the community. Seeing families, children, and professionals all engaging together showed how mental health conversations can become more accessible and less stigmatised when events are designed with inclusion at the centre.
What stood out most to me was the sense of togetherness and intentional care throughout the event. Think Tenacity’s mission to tackle health inequalities and create spaces where Black people feel seen, heard, and supported was evident in every part of the evening. Hosting the event at a vibrant riverside venue with free entry, wellbeing activities, and opportunities to socialise created an environment where people could relax while also engaging in serious and necessary discussions around mental health.
Events like this are essential because they remind us that advocacy, wellbeing, and community support all go hand in hand.
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.
Stories are powerful. They carry memory, experience, and truth in ways that forms and systems often cannot. For unpaid minority carers, our stories are not just reflections, they are essential to understanding the full picture of care.
I’ve recently shared a poem, “Our Stories Matter,” from my upcoming poetry book. It explores the importance of lived experience, intergenerational memory, and the voices that are too often overlooked within health and social care systems.
While assessments, care plans, and clinical notes tell part of the story, they rarely capture the depth of what families and carers experience every day. Our stories provide context. They bring meaning and complete the picture.
This is especially important within the context of PCREF, where recognising lived experience and cultural understanding is key to improving care and addressing inequalities. When carers’ voices are not heard, something vital is missing.
This poem is a reminder that our stories are central.
If you’ve supported someone through a stay in mental health services, your experience could help improve care for others.
Researchers at The University of Manchester are inviting people with lived experience—including carers to take part in an online workshop focused on improving how mental health services support people during hospital discharge, particularly for individuals from Black heritage communities.
Reason for research
Evidence shows that people from Black communities often face poorer outcomes in mental health care, including barriers to access and challenges during discharge from hospital.
To address this, researchers are working to make future services and research more inclusive, culturally responsive, and grounded in real experiences. Hearing directly from carers is a key part of that work .
Who is running this?
The workshop is being led by Dr Natasha Tyler, a Research Fellow at The University of Manchester, as part of work linked to improving future research and care approaches.
The session will also be supported by facilitators with lived experience, including carers, to ensure discussions are grounded and meaningful .
Who can take part?
You may be interested if you:
Have cared for someone who has been an inpatient in adult mental health services
Have experience of discharge from mental health care
Want to share your perspective to improve future support
What’s involved?
Format: Online (MS Teams)
Duration: 2 hours
Dates: Sessions planned between 23rd April and 8th May 2026
Payment: £60 as a thank-you for your time
Participants will receive questions in advance to help prepare for the discussion.
Why get involved?
Taking part is a chance to:
Help shape future mental health research and services
Ensure carers’ voices are included in decision-making
Contribute to reducing inequalities in care
Share your experience in a supportive environment
How to express interest
If you’d like to take part, you can follow the link in the invitation to share your availability or contact the research team directly.
