September is widely recognised as Suicide Prevention Awareness Month, with World Suicide Prevention Day taking place on 10 September.
Organised internationally by the International Association for Suicide Prevention and supported by the World Health Organization, the 2026 theme is “Changing the Narrative on Suicide,” with the call to action “Start the Conversation.”
Organisations such as Samaritans, PAPYRUS, Mind, Rethink Mental Illness and members of the National Suicide Prevention Alliance also work to raise awareness, challenge stigma and improve suicide prevention across the UK.
For this year’s campaign, I have produced a new awareness vlog focusing not only on people experiencing suicidal thoughts, but also on the unpaid mental health carers supporting them.
Relatives, partners and friends may spend long periods watching for warning signs, attending appointments and responding to crises. They can carry an enormous level of fear and responsibility, yet their own emotional needs are frequently overlooked.
Carers should never be expected to manage suicide risk alone. Professionals must listen to their concerns, involve them appropriately and ensure they can access support themselves.
In my new vlog, I discuss how we can challenge stigma, start compassionate conversations, listen without judgement and remember to check in with the person providing care as well as the person in crisis.
If you or someone you know needs urgent mental health support in England, call NHS 111 and select the mental health option. Samaritans can be contacted free, day or night, on 116 123. If someone is in immediate danger, call 999 or go to A&E.
Together, we can move from silence to conversation, from stigma to compassion, and from carers coping alone to communities sharing responsibility.
By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum
The August meeting of the National Ethnic Mental Health Carer Forum brought together unpaid carers, NHS leaders, healthcare professionals, academic researchers, and voluntary sector advocates from across the country. The session provided a vital space to address race equity, systemic racism, lived experience, and ongoing research into minoritised caring experiences.
Matthew McKenzie opened the meeting by welcoming attendees and reinforcing the core purpose of the national forum. He reflected on how the platform has grown into a crucial space where family carers can directly challenge health structures, influence decision-makers, and learn about national policy developments such as the Patient and Carer Race Equality Framework (PCREF). Matthew acknowledged that while discussions around institutional racism and health inequalities can be heavy and emotional, the forum remains a safe, respectful, and healing space dedicated to driving real, actionable change across the NHS.
Minute of Silence: Professor Jason Ardey
The forum opened with a poignant minute’s silence led by Debbie Best in honour of the life, legacy, and memory of Professor Jason Ardey following his passing.
Members paused to reflect on his landmark contributions to racial equality, education, and social justice. His legacy of challenging institutional barriers and amplifying minoritised voices continues to inspire the core work and mission of the forum.
Reflections on Race Equality: Norfolk and Suffolk NHS Foundation Trust (NSFT)
Speakers: Cath Byford (Deputy Chief Executive / Chief Nurse / Director of Patient Experience) & Annie (PCREF Carer Lead)
Cath Byford opened the trust’s update by offering an open and unvarnished reflection on NSFT’s ongoing race equity journey. Acknowledging that the trust has faced significant scrutiny and structural challenges over recent years, Cath emphasized that building genuine trust with minoritised communities requires moving beyond policy statements to deliver measurable, lasting systemic change. She explained that over the past 18 months, NSFT has embarked on a deliberate path to rebuild its patient experience framework, ensuring that health equity, anti-racism, and lived experience are embedded into every layer of clinical governance and strategic planning.
PCREF Carer lead Annie brought a vital lived-experience perspective to the presentation, sharing how the trust is working to bridge the gap between executive decision-making and the everyday realities of unpaid family carers. Together, they outlined the core pillars driving NSFT’s current equity transformation:
Dedicated Health Equity Team & Clinical Reform: The trust has invested heavily in establishing a specialist Health Equity team, created to audit clinical pathways and directly confront institutional disparities. The team’s operational focus is centered on dismantling disproportionate clinical interventions, specifically working to significantly reduce the use of physical and chemical restrictive practices, address the over-representation of Black and minority ethnic service users detained under the Mental Health Act, and monitor and reduce the disproportionate application of Community Treatment Orders (CTOs).
Diversifying Governance & Locality Councils: Cath shared candidly that an internal review of the trust’s governance structures revealed a stark under-representation of global majority voices across its five locality councils. Recognizing that local health strategies cannot succeed if key decision-making bodies remain ethnically unrepresentative, NSFT has launched targeted community outreach initiatives designed to recruit diverse community members, carers, and experts by experience onto these councils to ensure grassroot priorities shape service delivery.
Workforce Transformation & Reciprocal Mentorship: Highlighting broader organizational culture, Cath detailed how workforce race equity has been integrated into the trust’s 12 major transformation programmes. A central highlight of this work is the Transformational Reciprocal Mentorship Programme, coordinated by Ethan Charles, which was recently recognized nationally for healthcare excellence. The initiative pairs senior trust executives and board members with staff members from minoritised backgrounds in a reciprocal learning partnership, helping leadership understand systemic workplace barriers while creating clear pathways for career progression and equity across the trust.
Questions and Discussion
Q1. How is Norfolk and Suffolk NHS Foundation Trust embedding cultural awareness within service evaluation and PCREF implementation?
A question was raised regarding how patient and carer feedback is systematically captured, and whether cultural awareness is meaningfully integrated into trust surveys, service audits, and PCREF rollouts rather than treated as a tick-box exercise.
Response:
Cath Byford acknowledged that standard feedback mechanisms often fail to capture the nuanced experiences of minoritised communities. She explained that the trust is refining its data collection tools alongside its Health Equity team and local carers to ensure feedback loops directly inform clinical practice and PCREF operational plans.
Q2. How are intersectional barriers such as neurodivergence and criminal justice involvement being addressed for minoritised families?
A detailed discussion focused on the severe intersectional challenges faced by minoritised families, particularly where mental health conditions overlap with neurodivergence or involvement in the criminal justice system. Concerns were raised that carers face immense financial and logistical hurdles to attend meetings or advocate for relatives.
Response:
Cath and Annie agreed that intersectionality must be at the forefront of service design. The panel emphasized that research teams and trust steering groups must formally budget for carer access needs—including funding for sitters, respite, and transport—to enable equitable participation from grassroot carers.
Q3. How can NHS trusts move away from generic terminology like “BAME” to build trust with specific communities?
Contributors stressed the importance of discarding outdated, homogenized labels such as “BAME” in favor of recognizing specific ethnic and cultural identities. Members questioned how trusts plan to engage directly with local grassroot organizations rather than relying on top-down communications.
Response:
The presenters affirmed that language matters deeply in establishing trust. NSFT is focusing on direct partnerships with Voluntary, Community, and Social Enterprise (VCSE) sector organizations that already hold trusted relationships within specific cultural communities, ensuring engagement is authentic and localized.
Keynote Address: Competence, Leadership, and Race Equity
Speaker: Lord Victor Adebowale (Chair, NHS Confederation & Founder, NHS Race and Health Observatory)
Lord Victor Adebowale delivered a sweeping keynote address that fundamentally challenged traditional healthcare perspectives on race equity, anti-racism, and organizational accountability. Moving the discussion away from performative pledges and symbolic gestures, Lord Victor framed racial equity not as an optional moral, social, or political stance, but as a core requirement of clinical and operational competence.
He began by reframing the definition of leadership within the healthcare ecosystem, asserting that unpaid family carers act as leaders every single day. Through their daily advocacy, continuous care coordination, and tireless protection of vulnerable family members, carers demonstrate true leadership long before health systems officially acknowledge their presence.
Lord Victor drew stark attention to the persistent impact of the Inverse Care Law, illustrating how individuals from the global majority routinely receive poorer quality services and face worse health outcomes despite presenting with the highest levels of clinical need. He warned that system-wide failure to serve minoritised families cannot be viewed as an isolated issue; when a healthcare trust tolerates substandard, culturally unsafe care for Black and ethnic minority service users, the overall quality, safety, and effectiveness of care inevitably degrades for every patient using that service.
A central theme of his address focused on moving the national conversation away from an endless reliance on individual conscious or unconscious bias training. Lord Victor argued that over-emphasizing implicit bias often allows healthcare systems to evade operational accountability. Instead, anti-racism must be treated as a strict benchmark of professional capability. Leaders and clinicians who fail to deliver equitable care across diverse populations are not simply displaying personal bias they are actively choosing to operate incompetently. He insisted that health trust boards must begin holding executive leadership to the exact same rigorous accountability standards for race equity as they do for clinical safety and financial management.
Furthermore, Lord Victor emphasized that unpaid family carers represent the primary early-warning system within the entire healthcare structure. Carers are routinely the first to spot subtle signs of deterioration or service failure, often weeks before clinical teams become aware of an emerging crisis. He condemned the institutional practice of dismissing carer insights under the blanket rationale of “patient confidentiality,” warning that using information governance as an excuse to shut out family members discards the most valuable clinical intelligence available and actively compromises patient safety.
Four Rules for Authentic Community Engagement
To guide health trusts and Integrated Care Boards (ICBs) toward genuine structural reform, Lord Victor outlined four non-negotiable rules of engagement when working alongside minoritised communities and family carers:
Listen with Evidence of Being Heard: Listening exercises and consultation events are entirely meaningless unless community members and carers are provided with clear, practical evidence showing exactly how their feedback altered decisions, policies, or service delivery.
Transfer Real Power: Authentic engagement requires a fundamental shift in traditional power dynamics. Healthcare institutions must share authority and transfer tangible resources so that minoritised communities are empowered to act independently and lead changes themselves.
Equal Partnership over Superficial Co-production: Health systems must move beyond tokenistic co-production exercises, which often amount to seeking quick feedback on pre-written plans—and commit to long-term, equal governance partnerships where carers sit at the decision-making table from inception to evaluation.
Describable and Transparent Outcomes: Any service alteration or policy development resulting from community engagement must produce clear, tangible outcomes that are easily understood, described, and validated by the community itself, rather than hidden behind dense NHS jargon.
Matthew’s Question
Matthew raised concerns regarding the persistent barriers unpaid carers face—specifically questioning how health systems can stop excluding ethnic minority carers through medical jargon and information gatekeeping (such as using “confidentiality” as an excuse to exclude families), and how trusts can be held genuinely accountable under frameworks like the Patient and Carer Race Equality Framework (PCREF).
Lord Victor Adebowale’s Response
Lord Victor addressed this by framing race equity and carer involvement as a matter of operational and clinical competence rather than optional policy:
Reframing Carer Insights: He emphasized that family carers are the primary early-warning system in healthcare who spot signs of deterioration weeks before clinical teams. Dismissing carer insights using “confidentiality” throws away vital clinical data and actively compromises patient safety.
Competence over Bias: He stated that leaders who fail to provide equitable care to minoritised families or exclude carers are choosing to operate incompetently. Boards must hold executive leadership accountable for race equity to the exact same standards as clinical safety and financial management.
Rules of Engagement: He outlined that genuine engagement requires health trusts to listen with evidence of being heard, transfer real power to communities, build equal partnerships, and deliver transparent, describable outcomes that the community can easily see and verify.
Questions and Discussion
Q1. Why are Black men in mental health services disproportionately subjected to high doses of medication rather than holistic therapies?
A critical question was raised regarding why Black men entering acute mental health pathways are frequently managed through high-dose psychiatric medications and prolonged admissions rather than being offered timely talking therapies, early intervention, and holistic community support.
Response:
Lord Victor emphasized that over-reliance on medication and restrictive practices reflects systemic clinical failure and risk-averse institutional cultures. He stressed that true clinical competence requires services to offer culturally appropriate psychological interventions and preventative care early in the care pathway, rather than defaulting to chemical containment during crises.
Q2. How can healthcare systems better support the emotional, financial, and legal well-being of long-term family carers?
A forum contributor shared their personal experience as a sole carer managing a mother with vascular dementia and Alzheimer’s in rural Gloucestershire. They highlighted the severe isolation, legal hurdles, and financial exhaustion experienced by carers, asking directly: “Who is caring for the carer?”
Response:
Lord Victor and forum members acknowledged the systemic neglect of carer well-being. The discussion highlighted that supporting carers is a clinical necessity, not an optional luxury. Practical signposting was shared, pointing members toward specialist support networks and helplines, including Dementia UK, while calling on Integrated Care Boards (ICBs) to fund dedicated carer respite initiatives.
Research Updates: Amplifying Carer Voices
1. Black Carers and Learning Disability Services
Presenter: Lorraine Heath (Trainee Clinical Psychologist, University of Southampton)
Lorraine Heath introduced her doctoral research project exploring the complex, intersectional barriers that Black family carers encounter when navigating mental health and learning disability services on behalf of their relatives. Lorraine explained that while national policy increasingly highlights health equity, Black families caring for loved ones with learning disabilities continue to face profound structural, institutional, and cultural hurdles. These challenges frequently result in delayed access to vital support, misdiagnosis, or total exclusion from essential statutory services.
The research focuses on capturing the lived realities of Black carers across both child and adult services including Child and Adolescent Mental Health Services (CAMHS) and adult community mental health teams to understand how healthcare systems can better support families before crisis points occur. Lorraine emphasized that unpaid Black carers often have to act as fierce advocates, interpreters of complex care systems, and primary safety nets, often without receiving adequate recognition or formal support from service providers.
Research Objectives: The study aims to map out the specific diagnostic pathways, institutional barriers, and negative experiences that Black families face when seeking care. By identifying where services fail to provide culturally sensitive, timely support, the project seeks to build a robust evidence base to influence future clinical practice, service design, and commissioning standards across NHS mental health and learning disability teams.
Methodology & Care for Participants: Recognizing that discussing institutional barriers and negative service interactions can be emotionally draining, the study utilizes 90-minute flexible online interviews via Microsoft Teams, designed around the participant’s schedule and comfort. To ensure lived experience is meaningfully valued rather than exploited, all participants receive a £25 shopping voucher as a token of appreciation for their time and contribution. Furthermore, strict data protection protocols are embedded throughout the study to guarantee complete anonymity for all participating carers.
Lorraine invited members of the forum to share details of the study within their local networks, encouraging Black family carers with relevant lived experience to participate and ensure their voices shape future mental health provision.
Questions and Discussion
Q1. How will the study protect Black carers from re-traumatisation when discussing negative service experiences?
Forum members inquired about the safeguarding protocols in place for participants who may experience distress while recalling challenging interactions with health and social care services.
Response:
Lorraine confirmed that emotional safety is central to the study design. Pre-interview briefings, built-in debriefing sessions, and immediate signposting to culturally sensitive psychological support are provided to all participants.
2. Supporting the Supporters: Integrating Informal Carers
Presenter: Carol Garbutt (King’s College London)
Carol Garbutt introduced her master’s research project, Supporting the Supporters, which addresses the critical breakdown in communication and partnership between professional healthcare services and informal family carers. Carol explained that despite longstanding national directives highlighting the importance of involving family members, unpaid carers from minoritised backgrounds are routinely sidelined, excluded from decision-making, or left without basic support when supporting a relative through the mental health system.
The study explores the organizational culture, professional attitudes, and systemic practices that dictate how informal carers are treated across clinical settings. Carol highlighted that while professional staff often view safety and treatment solely through the lens of individual patient care, unpaid carers are the ones managing day-to-day crises, monitoring medication side effects, and providing essential emotional and practical stabilization at home. Failing to integrate these informal support networks into formal care planning not only places an overwhelming burden on family members, but actively compromises patient safety and recovery.
Research Scope & Focus: The study focuses on gathering perspectives from across the mental health ecosystem including professional healthcare workers, clinical staff, patient advocates, and voluntary sector leaders. By examining how professionals define, view, and interact with family carers, the research aims to pinpoint the precise organizational obstacles and misalignments that lead to carer exclusion.
Project Goals & Impact: The overarching objective is to build a robust, practice-informed evidence base that pushes mental health trusts to embed family carers into standard clinical workflows. Carol emphasized that true integration requires moving beyond informal signposting toward establishing clear communication protocols, ensuring carers are formally identified at the point of admission, and treating them as equal, valued partners in care planning and discharge processes.
Questions and Discussion
Q1. How does the research address instances where professionals hide behind confidentiality rules to exclude carers?
Members highlighted that staff frequently cite information governance to withhold basic care updates from family members.
Response:
Carol explained that her study specifically examines professional attitudes and organizational policies surrounding communication. The goal is to highlight best-practice frameworks that allow clinicians to share essential care planning details with families while respecting patient rights.
3. Partners’ Experiences of Gynaecological Cancer
Presenter: Lara (Trainee Clinical Psychologist, University of Hertfordshire)
Lara introduced her doctoral research exploring the lived experiences of partners supporting individuals diagnosed with gynaecological cancer.
Research Focus: Examining the complex emotional, physical, relational, and financial impacts on partners navigating a gynaecological cancer diagnosis.
Project Goal: Tackling cultural taboos and stigma surrounding gynaecological health, providing evidence to help cancer charities and NHS trusts design tailored psychological and practical support packages for partners.
Questions and Discussion
Q1. How does the study account for cultural stigmas surrounding gynaecological health within minoritised communities?
Carers noted that discussion of gynaecological health remains heavily stigmatized in many ethnic communities, which can prevent partners from seeking external help.
Response:
Lara acknowledged these cultural complexities, explaining that the interview frameworks are designed to be sensitive to diverse cultural norms, allowing participants to share their experiences in a safe, non-judgmental environment.
Creative Advocacy: Combatting Gatekeeping Through Poetry
Matthew McKenzie presented a video poem developed as part of his ongoing advocacy work surrounding the Patient and Carer Race Equality Framework (PCREF).
Using creative media and spoken word, the poem visually and emotionally illustrates the everyday barriers faced by ethnic minority carers including institutional gatekeeping, dense medical jargon, exclusion from multi-disciplinary team meetings, and the sensation of being rendered invisible by healthcare professionals.
Matthew emphasized that creative media and arts-based advocacy are powerful mechanisms for staff training. By translating complex policy frameworks like PCREF into lived emotional narratives, creative media helps NHS staff understand the human impact of structural exclusion and drives empathetic, anti-racist practice across clinical teams.
Key Takeaways and Next Steps
The August meeting highlighted several critical action points for the forum and its partner organizations:
Accountability over Intent: Moving beyond policies, anti-racism charters, and pledges to demand measurable, transparent outcomes in patient care and carer satisfaction.
Dismantling Institutional Gatekeeping: Working with NHS trusts to ensure family carers are identified and involved early in treatment pathways, dismantling the misuse of confidentiality as a barrier.
Embedding Co-Production: Supporting minoritised carers to join trust boards, steering groups, and PCREF advisory panels to ensure lived experience directly shapes local health delivery.
Looking Ahead to September:
The next national forum meeting will feature updates from Sheffield Health and Social Care NHS Foundation Trust, the Race Equality Foundation, Black Country Healthcare NHS Foundation Trust, and regional carer networks.
On Monday 24 August, I facilitated another meeting of the South London Mental Health Carers Forum. The forum brings together unpaid carers and carer representatives from Lewisham, Lambeth, Southwark and Croydon, giving people a space to share experiences, learn about their rights and influence the development of local mental health services.
We welcomed carers with many different experiences, including parents supporting adult children with serious mental illness, autism and substance misuse, as well as people involved in advocacy, peer support, staff training and service development. Some members had been navigating the mental health system for many years, while others were newer to caring and looking for guidance.
A powerful message emerged from the introductions: even experienced carers can struggle to understand how different parts of the mental health system fit together. Services can feel fragmented, with carers passed between teams or excluded from discussions despite holding important information about their loved one’s history, warning signs and support needs.
Supporting the Supporters research
We were joined by Carol, an unpaid carer and postgraduate student studying psychology and neuroscience of mental health at King’s College London.
Carol introduced her research project, Supporting the Supporters: Professional Perspectives on Integrating Informal Care into the Mental Health Ecosystem. The study explores how professionals understand the contribution made by unpaid carers, how information and support could be improved, and how carers could be more meaningfully involved alongside mental health professionals.
As part of the research, Carol is interviewing people with professional or advocacy perspectives, including psychologists, psychiatrists, GPs, commissioners, teachers, service providers and carer advocates. I have already taken part in an interview, and several forum members expressed an interest in contributing.
The discussion highlighted why it is so important for carers’ experiences to be represented in academic research. Research can help shape future policy and practice, but carers also stressed that participants should be kept informed about what happens to the findings. Too often, people share deeply personal experiences with research projects and never hear about the outcome.
I also informed members about a separate University of Oxford study exploring wellbeing and social-group attendance among people caring for someone with a serious mental illness. We hope to hear more about this opportunity at a future meeting.
Triangle of Care: more than an accreditation badge
The main presentation focused on the Triangle of Care, a framework developed by Carers Trust to improve cooperation between the person receiving mental health services, the professionals supporting them and their unpaid carer.
As facilitator, I explained that the framework should be something carers experience in practice, not simply an accreditation badge displayed by an organisation.
South London and Maudsley NHS Foundation Trust has achieved Triangle of Care Star 1 for inpatient services and Star 2 for community services. With this work now being reviewed, there is an important opportunity for carers to help examine whether the standards are making a noticeable difference across local services.
Carers should be recognised and recorded, listened to when they provide relevant information, given clear explanations about confidentiality, offered appropriate information and support, and involved at important points in care and discharge planning. Staff should also understand that carers have needs and rights of their own.
Confidentiality should not become exclusion
Confidentiality produced one of the most detailed and passionate discussions of the meeting. Several carers described situations in which confidentiality had been used to shut down communication completely.
Respecting the service user’s privacy is essential, but confidentiality does not prevent professionals from listening to a carer’s concerns. A carer may hold vital information about changes in behaviour, medication, relapse indicators, risks or what the person is like when well.
Even when professionals cannot disclose personal clinical information, they can usually provide general information about how a service works, explain how a carer can submit concerns and signpost the carer towards available support. Carers should not simply be told, “We cannot speak to you,” and then left without guidance.
Members also discussed situations where a person experiencing a serious deterioration may withdraw consent for family involvement. These cases require careful professional judgement, particularly where there may be questions about safety, insight or decision-making ability. Carers felt that staff need more confidence and training to manage these situations without automatically treating the family as a problem.
Carers were encouraged to ask whether their role has been recorded, how they can share information with the clinical team, how they will be involved in care and discharge planning, and who they can approach if their perspective is being overlooked. Where serious concerns are ignored, carers should raise them in writing so there is a clear record.
Carer involvement in discharge
The discussion then moved to hospital discharge. Carers can sometimes be contacted shortly before someone returns home, without a proper conversation about whether they are able or prepared to provide the expected support.
A safer discharge should include an early discussion with the carer about the help they can realistically offer. Information about medication, warning signs, follow-up arrangements and points of contact should be explained clearly. Professionals should not assume that a family member can take on intensive caring responsibilities simply because they are related to the person.
Carers also need to know that they can request a carer’s assessment from their local authority. An assessment can help identify the effect caring is having on their own wellbeing and what support may be needed. Existing assessments should be reviewed when circumstances or caring responsibilities change.
What carers raised during the forum
A substantial part of the meeting was led by carers sharing what they had experienced while supporting relatives through mental health services. Although everyone’s circumstances were different, many common concerns emerged across Lewisham, Lambeth, Southwark and Croydon.
Several carers described the mental health system as fragmented and difficult to navigate. Families may deal with inpatient wards, community mental health teams, crisis services, supported accommodation, GPs and social care, but these services do not always appear to communicate effectively with one another. One carer reflected that even after years of involvement, it can still be difficult to know whom to contact when a new crisis develops. This raised concerns about how much harder the system must be for people who are new to caring.
Carers also felt that decisions made at senior levels do not always reflect what happens in practice. Policies, pathways and strategies may appear clear on paper, but families can experience delays, poor communication and a lack of coordination. Members wanted more people with direct experience of using or working within mental health services to influence decisions at the highest levels.
A major concern was the failure to listen when carers report early signs of deterioration. Carers often recognise changes in sleep, behaviour, medication use, substance misuse or communication long before a situation reaches crisis point. Some members described situations in which their warnings were overlooked, only for the person’s condition to worsen later. Carers felt that their observations should be recorded and considered as part of risk assessment and relapse prevention, even when professionals cannot share confidential clinical information in return.
Confidentiality was one of the most strongly debated issues. Carers understood that people using mental health services have a right to privacy. However, they felt that confidentiality is sometimes interpreted too rigidly and used to exclude families from almost every conversation.
The group stressed that professionals can still listen to information provided by a carer. They can also explain how the service operates, receive concerns, provide general guidance and direct the carer towards support. Saying “we cannot tell you anything” should not bring all communication to an end.
Some carers described being excluded after their relative had withdrawn consent for family involvement, sometimes during a period of serious illness or limited insight. Members questioned how consent is considered when someone’s mental state or decision-making ability may be changing. They felt staff should look carefully at the individual circumstances, risks and history instead of applying confidentiality as an automatic barrier.
The inconsistency between professionals was another concern. Some staff members communicate sensitively and recognise the value of family knowledge, while others refuse even to listen. Carers felt that the quality of their involvement should not depend on which professional happens to answer the telephone. Better training, management support and accountability are needed so that good carer practice becomes consistent across services.
There was also discussion about inaccurate or outdated information remaining in health records. Carers described how an early diagnosis, allegation or misunderstanding can continue to influence future treatment long after it has been challenged. Correcting such information can be extremely difficult, yet it may affect how professionals view both the person receiving care and their family. Members wanted clearer ways to challenge inaccuracies and ensure that corrections or alternative professional opinions are properly recorded.
Carers raised concerns about attitudes towards families. While relationships can sometimes be complicated, relatives should not automatically be viewed as interfering or obstructive. Where disagreements arise, members suggested that an independent person, advocate or senior professional could help everyone understand the different perspectives. Completely blocking communication can damage family relationships and may also undermine the person’s recovery and safety.
The experiences of carers from racialised communities were also recognised. One member spoke about the fear and mistrust that can develop when Black men repeatedly come into contact with mental health services or the criminal justice system. The forum acknowledged the importance of culturally responsive services that understand how race, stigma, previous experiences and unequal treatment can affect whether families feel safe seeking help.
Hospital discharge was another prominent concern. Some carers reported being contacted too late, with an expectation that they would immediately resume significant caring responsibilities. Members felt carers should be involved early enough to discuss what support they can realistically and safely provide. They should receive clear information about medication, warning signs, follow-up arrangements and who to contact if the person’s condition deteriorates.
Carers should not be treated as an unlimited resource. Being a parent, partner, sibling or other relative does not automatically mean someone is physically, emotionally or practically able to provide the level of support being assumed. The carer’s own health, employment, family responsibilities and wellbeing must be considered during care and discharge planning.
Members also discussed the importance of carer’s assessments. Some people had received very few assessments despite caring for many years. Carers were encouraged to request an assessment from their local authority and to seek a review when their responsibilities or personal circumstances change. An assessment creates a formal record of the caring situation and may identify support needed to protect the carer’s wellbeing.
Another recurring issue was accountability. Guidance about involving carers may exist, but families are not always sure what to do when services fail to follow it. Members were encouraged to put important concerns in writing, keep records of correspondence and ask for matters to be escalated when necessary. A clear written record can become particularly important if warnings have been ignored or a serious incident later occurs.
Despite these difficult experiences, the conversation also demonstrated the strength of peer support. Carers shared knowledge, validated one another’s concerns and helped newer members understand that they were not alone. The group strongly encouraged carers not to remain isolated, even when their loved one appears relatively well. Joining a carers’ centre, peer-support group or advocacy forum can provide information and connections before another crisis occurs.
The overall message from carers was clear: they are not asking to take over clinical decisions. They are asking to be recognised as people with valuable knowledge, their own support needs and an important role in safer care. The Triangle of Care will only have meaning if carers can see and feel these principles operating in their everyday contact with services.
Turning shared experience into influence
This meeting demonstrated why independent, carer-led forums remain so important. They reduce isolation, allow newer carers to learn from those with longer experience and help identify patterns that may otherwise be dismissed as individual incidents.
Members involved in SLaM meetings and the forthcoming carers’ listening event were encouraged to raise the Triangle of Care and ask how carers will contribute to its review. I will also seek to invite representatives leading this work at SLaM to a future forum so that they can update carers directly and respond to questions.
Our next South London Mental Health Carers Forum is due to take place on Monday 28 September 2026. We will continue examining the Triangle of Care, with a stronger focus on carers’ experiences and the practical changes they want to see across mental health services.
I would like to thank everyone who attended and spoke so openly. The experiences shared were sometimes difficult, but they reinforced an important principle: carers should not have to fight simply to be recognised, heard and supported.
My latest poetry video, “Gatekeeping Care,” explores the barriers minority ethnic unpaid carers can face when trying to navigate mental health services.
This is where unwritten rules, complicated medical language and unexplained carer rights can leave people struggling to understand how to obtain support.
Unpaid carers can also have their concerns not taken seriously.
The poem also reflects on what it feels like when decisions are made without carers and their cultural or religious beliefs are overlooked.
Through this poem, I want to raise awareness of why the Patient and Carer Race Equality Framework (PCREF) matters to carers and families.
I feel mental health services must listen to carers, communicate clearly and recognise them as equal partners rather than leaving them feeling judged, invisible or powerless.
Black unpaid carers can face significant barriers when trying to access mental health support for themselves or the person they care for.
These difficulties may include long waiting times, financial pressure, cultural stigma, fear of statutory services and a shortage of professionals who understand the effects of racism, racial trauma and culturally specific caring experiences.
In my new video, I examine how misdiagnosis, over-policing and expectations that Black families should simply remain “strong” can create mistrust and discourage carers from asking for help.
Drawing on my perspective as a Black lived-experience carer, I also consider what mental health services can do differently. Genuine improvement requires culturally responsive support, greater representation, safe spaces for carers, accessible community-led services and meaningful partnership with Black carers and families.
PCREF provides an important opportunity to challenge racial inequalities, but its success will depend on whether services listen to lived experience and turn commitments into visible action.
What does racial inequality in mental health really look like from the perspective of an unpaid carer?
In this powerful spoken-word poem, Matthew McKenzie explores the realities of racism, bias, exclusion, stigma, and unequal treatment experienced by many ethnic communities when accessing mental health services.
Through an A–R alphabet structure, this poem highlights why the Patient and Carer Race Equality Framework (PCREF) matters and why genuine cultural understanding, listening, and inclusion are essential to improving care.
This poem is part of my 200-poem PCREF collection, Unpaid, Unseen and Yet Unbroken, giving voice to the experiences of unpaid carers supporting relatives with mental illness while challenging racial inequalities across mental health services.
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.
By Matthew McKenzie – Ethnic Mental Health Carer and Poet
invisible challenge for ethnic minority mental health carers. “Poem 15: The friends I have lost,” a powerful spoken-word piece from Matthew McKenzie’s poetry book that is in development Unpaid, Unseen and Yet Unbroken, sheds a crucial light on this hidden struggle.
It captures the profound loneliness of an unpaid carer who watches friendships fade away as community members close their ears and elders demand privacy over open support. By highlighting the intersection of familial duty, mental illness, and societal rejection, this moving presentation exposes the heavy emotional toll born by those who care for loved ones behind closed doors.
This poem serves as a stark reminder of why initiatives like the Patient Carer Race Equality Framework (PCREF) are so urgently needed in healthcare and community support networks today.
Watch the full poetry video to immerse yourself in this essential conversation, and help us raise awareness for the vital support and recognition that ethnic minority mental health carers truly deserve.
By dismantling the barriers of stigma and addressing the specific inequalities faced by ethnic minority families, PCREF aims to ensure that no carer is left to navigate this challenging journey in absolute isolation.
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.
This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.
Opening Remarks – Dr Neil Churchill
Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.
He highlighted several key challenges currently facing carers:
• Rising financial pressures and cost-of-living concerns. • The growing number of carers leaving employment due to caring responsibilities. • Increased risks of poor physical and mental health among carers. • Social isolation and loneliness experienced by many carers. • Growing concerns around carer burnout.
Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.
A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.
Carer Stories and Lived Experience
One of the most powerful aspects of the event was hearing directly from carers themselves.
Miles Bing – Caring Through Dementia
The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.
Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.
He spoke about:
• The long-term impact of dementia on families. • The challenges of accessing services in rural areas. • The lack of coordination between health and social care systems. • The practical and emotional burden placed on carers.
Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.
Young Carers – Julia and Elsie
The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.
Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.
Their stories demonstrated:
• The hidden nature of young caring responsibilities. • The emotional impact caring can have on children and young people. • The importance of early intervention and support. • The value of dedicated young carers services.
Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.
The standing ovation they received reflected the courage and honesty with which they shared their experiences.
Round Table Discussions
Following the morning speakers, attendees participated in facilitated round table discussions.
These conversations focused on:
• The biggest issues facing carers over the next six months. • Practical actions that could help carers in their caring role. • Barriers to accessing support. • Positive examples of support that should be expanded.
Several common themes emerged from these discussions:
Earlier Identification
Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.
Access to Information
Attendees highlighted how difficult it can be to find accurate and timely information about available support.
Financial Pressures
Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.
Mental Health and Wellbeing
Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.
Speaker sessions resumes
Diverse Communities and Caring
A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.
She discussed additional challenges experienced by carers from minority communities, including:
• Language barriers. • Cultural differences. • Social isolation. • Displacement trauma. • Immigration-related issues. • Financial and emotional dependency.
Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.
She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.
Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.
My Presentation – A Carer’s Journey
I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.
One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.
However, over time I found myself:
• Coordinating care. • Supporting hospital admissions and discharges. • Managing appointments. • Advocating with professionals. • Navigating complex systems. • Supporting multiple family members simultaneously.
I spoke about how difficult it can be when carers are not listened to or involved in important decisions.
I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.
One of the central themes of my presentation was carers’ rights.
I encouraged carers to:
• Identify themselves as carers. • Seek support from local carers organisations. • Request carers assessments. • Learn about their rights. • Participate in co-production and service improvement. • Share their experiences to help reduce stigma.
To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.
Afternoon Reflections and Future Priorities
The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.
Discussions focused on:
• Improving identification of carers. • Supporting carers before crises occur. • Encouraging carers to access support services. • Learning from positive experiences of care. • Strengthening partnerships between carers and professionals.
Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.
Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.
Key Messages from the Day
Several important messages emerged consistently throughout the event:
Carers Need Recognition
Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.
Carers Need Practical Support
Information, respite, emotional support and financial advice remain essential.
Carers Must Be Involved
Carers are experts in the lives of the people they support and should be treated as partners in care.
Young Carers Need Protection
Children and young people with caring responsibilities require dedicated support and opportunities to thrive.
Communities Matter
Strong local networks can help reduce isolation and improve wellbeing.
Prevention Is Better Than Crisis Management
Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.
Conclusion
The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.
Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.
Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.
As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.
The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.
Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.
By Matthew McKenzie – Carer, Author, Poet and Host of the Carers UK Information Stall 10 June 2026, Perceval House, Ealing
As a carer myself, supporting both of my brothers, I understand that caring is often a role we never planned for, yet one we embrace out of love, duty and commitment. It can be rewarding, but it can also be isolating, exhausting and overwhelming. That is why events such as the Carers Week Celebration 2026, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council, are so important.
I think it reminds us that carers matter, that our voices are heard and that we are not alone.
Having the privilege of hosting the Carers UK information stall, while also attending as a carer, poet and author, I witnessed first-hand the incredible sense of community that filled Perceval House throughout the day.
The event brought together carers, professionals, charities, community organisations and council representatives for a celebration that was both informative and inspiring. Alongside the opportunity to gather information and advice, carers enjoyed complimentary refreshments, free manicures from students of Uxbridge College, artwork exhibitions and the chance to connect with others who truly understand the caring journey.
Carer Stalls of Support and Opportunities
One of the highlights of the day was the large exhibition area, where carers could meet a wide range of organisations offering support, guidance and practical services.
The information stalls represented the breadth of support available across Ealing and North West London. Throughout the day carers visited displays from organisations including:
Carers UK
Ealing Carers Partnership
Ealing Carers Hub
Mind
RISE
Ealing Advice Service
Harlington Hospice / Harlington Care
Independent Mental Health Advocacy Services
Volunteer Centre Ealing
Eating Disorders Support Services
Community wellbeing organisations
Health and social care providers
Local voluntary sector groups
Arts and creativity projects for carers
Community engagement and peer support groups
Many stalls offered practical information about carers’ rights, benefits, wellbeing support, mental health services, respite opportunities, advocacy and volunteering. Others showcased creative projects and community activities designed to reduce isolation and improve wellbeing.
It was also great to see Carer Poetry displayed including the Carer Poetry group I run with Ealing Carers.
At the Carers UK stall, I had numerous conversations with carers who were seeking information about financial support, carers’ assessments, employment rights and how to balance caring responsibilities with their own health and wellbeing. What struck me most was how many carers were attending such an event for the first time and discovering services they never knew existed.
The exhibition also featured the moving “A Carer Is…” artwork display, where carers expressed their experiences through art. The exhibition provided a powerful reminder that caring is not simply a task—it is an emotional journey filled with love, sacrifice, resilience and hope.
Listening to Carers: The Ealing Carers Forum and Council Presentations
A major focus of the day was the Carers Forum and Question & Answer Session, where carers had the opportunity to hear directly from council leaders and ask questions about services, support and future plans.
The event was opened by senior representatives who acknowledged the enormous contribution carers make every day.
Among the key speakers were:
Paul Driscoll, Cabinet Member for Healthy Equal Lives, Ealing Council
Kashmir Takhar, Ealing’s Carers Commissioner
Senior representatives from Adult Social Care
Sophie (Assistant Director, Adult Social Care)
Representatives from Ealing Carers Partnership
Representatives from Ealing Carers Hub
Jane Wheeler, Chief Executive of Harlington Hospice
Paul Driscoll spoke about his commitment to understanding carers’ experiences and ensuring that Ealing’s Carers Strategy becomes a meaningful reality rather than simply another policy document. He emphasised the importance of recognition, support and partnership working with carers.
The presentation by Kashmir Takhar focused on Ealing’s Carers Strategy, a joint strategy developed in partnership with carers, health services, social care and voluntary sector organisations. The strategy highlights four key priorities:
Identifying carers early in their caring journey.
Helping carers maintain family and community life.
Supporting carers’ physical and mental wellbeing.
Helping carers maximise income and achieve their potential.
The presentation revealed that there are approximately 24,000 carers in Ealing, although many remain hidden and do not identify themselves as carers. It also highlighted the growing challenges carers face around mental health, financial pressures, access to services, respite care and social isolation.
Particularly encouraging was hearing about plans to improve access to information, increase wellbeing activities, strengthen respite opportunities and expand support for young carers and working carers.
The Power of Carers’ Voices
One of the most important aspects of the forum was the open discussion session.
Carers shared their personal experiences, raising concerns about respite services, communication between council departments, transport arrangements and the challenges of navigating complex systems while already carrying significant caring responsibilities.
A particularly powerful contribution came from a carer who described how difficult it had been to arrange respite care due to poor coordination between services. The honesty and emotion behind this contribution resonated with many people in the room because it reflected experiences that carers often face but rarely have opportunities to discuss publicly.
Council representatives acknowledged these concerns and committed to improving communication, responsiveness and coordination across services. Assistant Director Sophie openly recognised that carers deserve better experiences and welcomed continued feedback to help shape future improvements.
Representatives from frontline organisations, including Ealing Advice Service, also highlighted recurring issues encountered by carers and stressed the importance of joined-up working between agencies.
Later in the session, Jane Wheeler from Harlington Hospice explained how the organisation’s carers’ short break service supports carers through home-based respite, community outings and specialist support. Her presentation reinforced the message that carers themselves need care, support and opportunities to recharge.
It was more than just a Carers Event
As the day came to a close, what remained was a sense of connection.
For many carers, simply being in a room full of people who understood their experiences was invaluable. There was laughter, conversation, shared stories and moments of reflection. New friendships were formed, information was exchanged and carers left knowing that support is available.
From my own perspective, hosting the Carers UK stall and speaking with so many dedicated carers reinforced why events like this matter. Caring can often feel invisible. The hours spent supporting loved ones frequently go unnoticed by wider society. Yet carers are the backbone of our communities and health systems.
The Carers Week Celebration reminded us that carers deserve recognition not just during one week each year but every day.
To everyone who organised the event, staffed a stall, delivered a presentation, volunteered their time or simply attended and shared their story, I thank you.
Most importantly, to every unpaid carer reading this: thank you for everything you do.
A Caring Mind 