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.
I am pleased to share a research opportunity from Lara Pope, a Doctoral Clinical Psychology student at the University of Hertfordshire, who is looking to hear from partners of people who have experienced gynaecological cancer.
As someone who campaigns for greater recognition of unpaid carers and those supporting someone affected by cancer, I know that the experiences of partners can sometimes become overshadowed by the understandable focus on the person receiving treatment.
Yet partners can experience considerable emotional, practical and relationship changes of their own.
About the research
“Exploring partners’ experience of gynaecological cancer: An Interpretive Phenomenological Analysis.”
The research aims to better understand what it is like to be the partner of someone who has experienced gynaecological cancer, including how partners navigate their own needs, relationships, identity and intimacy.
Lara is particularly keen for the research to reach people whose voices can sometimes be less visible in research, including male partners, people from Global Majority communities and LGBTQ+ communities.
Who can take part?
You may be eligible if you:
Are aged 18 or over
Live in the UK
Speak English
Are the partner of someone diagnosed with gynaecological cancer at least 12 months ago
There are some additional eligibility considerations which Lara can discuss with anyone interested in participating.
What does taking part involve?
Participants will take part in an online semi-structured interview, providing an opportunity to talk about their experiences and perspectives as a partner.
The interview will last approximately 45–90 minutes.
Participants can choose either a £20 Love2Shop voucher or have £20 donated to one of three selected cancer charities in recognition of their participation.
The importance of the research
Cancer does not only affect the person receiving the diagnosis.
Partners may find themselves providing emotional support, attending appointments, managing additional responsibilities and trying to support the person they love while also dealing with their own fears and emotions.
Research that listens directly to partners can help improve understanding of these experiences and potentially inform recommendations for services, professionals and organisations supporting families affected by cancer.
Interested in taking part?
Please see the research recruitment poster accompanying this article, including the QR code for further information.
You can also contact the researcher directly:
Lara Pope Doctoral Clinical Psychology Student University of Hertfordshire Email: lp24abe@herts.ac.uk
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.
By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador
Cygnet PCREF Carer Lead & Carer Ambassador
On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.
The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services. The afternoon was designed around inclusion, psychological safety and optional participation, allowing people to contribute in whatever way felt comfortable to them.
As someone who has cared for family members affected by severe mental illness for many years, I continue to believe that poetry allows carers to communicate emotions that ordinary conversations often fail to capture. Statistics tell us what is happening, but poetry often explains how it feels. This aligns closely with PCREF’s ambition to humanise care, improve understanding of racial inequalities and ensure lived experience genuinely influences service development.
The event opened with readings from my forthcoming collection of PCREF poems, including “Change is Possible.” Rather than focusing solely on racism, the discussion explored hope, community, partnership, co-production and carers becoming recognised as equal partners within mental health care. Participants reflected that although change often feels slow, meaningful progress can still occur when carers are given opportunities to influence services.
One participant commented that the poem should never have needed to exist because carers should already be recognised and listened to. Another reflected that the line “those doors open slowly” accurately described the experience of advocating for loved ones over many years. These discussions reminded everyone that poetry can stimulate conversations which may never emerge during formal meetings or consultations.
One of the highlights of the afternoon was a collaborative workshop led by Jo Lambert, introducing participants to the Hold the Hope project through art, colour and reflection.
Rather than asking carers to simply colour a picture, participants were encouraged to think about what hope, equality, dignity and belonging meant to them personally. They selected PCREF-related words, explored why particular colours reflected their emotions and discussed how creativity can communicate experiences beyond spoken language.
The discussion demonstrated that every participant interpreted the same image differently.
Some chose calming blues to represent peace and trust.
Others used brighter colours to symbolise recovery, resilience and optimism.
Several carers explained that colouring became a form of mindfulness, allowing them to process difficult emotions whilst talking with others.
The activity also highlighted something particularly important from a lived experience perspective. Mental health carers frequently spend years speaking on behalf of others. Opportunities to express their own feelings are much rarer. Through art and poetry, carers were able to focus on themselves without feeling they had to justify or defend their experiences.
This reinforced one of the strongest messages of the day:
Creative expression is not simply an enjoyable activity, it is another form of lived experience evidence.
Participants also appreciated that there were no “right” or “wrong” answers. Every artwork reflected an individual caring journey, demonstrating the diversity that exists within the unpaid carer community.
The power of shared lived experience
Perhaps the most valuable aspect of the event was the conversation that developed naturally between carers.
Discussions moved beyond poetry into themes including:
feeling excluded because of confidentiality
racial inequality within services
the emotional burden of long-term caring
recognition of carers as equal partners
loss of identity through caring
maintaining hope during crisis
the importance of community support
Many participants reflected that carers often possess significant practical knowledge but are still not viewed as equal partners within clinical decision making.
One participant explained that carers are frequently expected to educate professionals whilst simultaneously managing the emotional impact of supporting someone in crisis. Others spoke about the exhaustion of constantly advocating for loved ones whilst trying to maintain their own wellbeing.
These conversations demonstrated exactly why creative events have an important place within PCREF. Rather than collecting another questionnaire, participants were able to describe experiences in their own words, using poetry, storytelling and discussion.
Importantly, professionals attending the session also listened.
This helped create genuine dialogue rather than the traditional model where professionals ask questions and carers provide short answers.
The atmosphere remained respectful throughout, allowing difficult topics including racism, discrimination and feeling unheard to be explored constructively.
For many attendees, simply meeting other carers who understood their experiences reduced feelings of isolation.
Celebrating culture and creativity
The second half of the afternoon celebrated cultural diversity through music, spoken word and performance.
Faith shared “Soothing Blue,” a poem that had been transformed into music. Hearing lived experience expressed through song demonstrated another creative way carers can communicate emotions that may otherwise remain hidden. Participants reflected on themes of healing, identity and rediscovering themselves beyond their caring role.
Brenda then performed traditional Jamaican folk songs, including “Chi-Chi Bud Oh” and “By the Rivers of Babylon.” These performances reminded everyone that culture forms an important part of identity and wellbeing. Cultural expression can strengthen belonging and create opportunities for people from different backgrounds to learn from one another.
The PCREF word search and poetry activity further encouraged participants to explore words such as community, dignity, inclusion, hope, equality and compassion before creating short poems of their own. What initially appeared to be a simple puzzle became another opportunity for reflection and discussion.
Throughout the afternoon there was laughter, encouragement and mutual support. Participants applauded one another’s contributions regardless of previous poetry experience, reinforcing that everyone had something valuable to contribute.
By combining poetry, visual art, music and conversation, the event demonstrated that creativity can become a powerful vehicle for engagement with carers who may not usually participate in traditional consultation events.
Reflections and looking ahead
Looking back as both a lived experience carer and PCREF Carer Lead, I believe this event demonstrated several important lessons.
Firstly, carers do not simply want to be consulted, they want to be heard.
Secondly, creative approaches allow conversations to emerge that formal meetings often miss.
Thirdly, culture matters. When people feel safe enough to bring their whole identity into a room, discussions become richer, more authentic and more meaningful.
The Voices & Verses programme is gradually becoming more than a poetry group. It is developing into a community where carers can connect, learn from one another and influence future mental health services through creativity.
Future events will continue to develop this approach by:
expanding hybrid participation so more carers can join remotely;
increasing opportunities for cultural storytelling;
creating more collaborative art and poetry projects;
transforming poems into music and other creative media;
strengthening links between PCREF, Triangle of Care and co-production.
Most importantly, the event reminded us that lived experience should never be viewed as an optional extra.
Every poem, every conversation and every shared story represented expertise developed through years of caring.
PCREF asks organisations to listen more carefully to diverse communities.
This event showed that when carers are given the right environment, they do not simply speak—they inspire, educate and help shape better mental health services for everyone.
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 – Carers UK ambassador / Chair of National ethnic mental health carers forum
Are you a Black unpaid carer supporting a family member with a learning disability (sometimes referred to as an intellectual disability) who has experienced mental health difficulties?
Have you ever tried to access mental health support on their behalf? This could include contacting services such as Community Learning Disability Teams, CAMHS, Community Mental Health Teams, Talking Therapies or other mental health services.
If so, your experiences matter.
Lauren Heath, a second-year Trainee Clinical Psychologist at the University of Southampton, is conducting doctoral research exploring the experiences of Black carers who have accessed, or attempted to access, mental health support for a family member with a diagnosed learning disability.
We know that Black unpaid carers often face additional challenges when trying to navigate health and social care systems. Too often, their experiences are unheard or underrepresented in research. This study aims to better understand those experiences and help inform more culturally sensitive and inclusive services in the future.
You may be eligible to take part if you:
Identify as Black.
Have significant caring responsibilities for a family member with a diagnosed learning disability (or intellectual disability).
Have accessed, or attempted to access, mental health services on their behalf.
Taking part will involve:
A confidential interview lasting approximately 1.5 hours via Microsoft Teams.
Your responses will be anonymised once all interviews have been completed.
You will receive a voucher to thank you for your time and contribution.
Lauren previously worked within Community Learning Disability Teams across the UK and became interested in understanding why so few Black families appeared to be accessing these services. Her doctoral research hopes to amplify the voices of Black carers and contribute towards improving culturally sensitive support for families in the future.
If you think this research may apply to you, or someone you know, please consider taking part or sharing this opportunity within your networks.
To find out if you are eligible, you can complete the short questionnaire or contact Lauren directly at L.Heath@soton.ac.uk.
Your lived experience could help shape future services for Black families and carers.
By Matthew McKenzie – Carer & Chair of the National Ethnic MH carer Forum
The June 2026 National Ethnic Mental Health Carer Forum brought together carers, NHS Trusts, researchers, voluntary organisations and mental health professionals from across England to discuss one shared ambition improving mental health services through genuine co-production with ethnic minority carers.
Matthew reminded delegates that carers develop expertise through lived experience. Supporting a family member with severe mental illness means navigating NHS services, social care, benefits systems and advocacy. These experiences provide knowledge that cannot be learned through textbooks alone.
Opening Presentation
Matthew McKenzie
The Importance of Co-production
Forum Chair Matthew McKenzie opened the meeting by welcoming carers and professionals from across England and reflecting on more than a decade of leading the National Ethnic Mental Health Carer Forum.
He explained how the forum has evolved alongside the NHS Patient and Carer Race Equality Framework (PCREF), providing an increasingly important national platform for ethnic minority carers to influence mental health services.
A recurring theme throughout the presentation was the internationally recognised principle:
“Nothing About Us Without Us.”
He explained that this principle has guided disability rights and patient involvement movements for many years and remains just as relevant today for carers supporting loved ones with serious mental illness. Family carers often spend years navigating mental health services, social care systems and community support, developing valuable knowledge through lived experience that professionals alone cannot acquire. This expertise is especially important for carers from minority ethnic communities who may also encounter cultural misunderstandings, language barriers, discrimination or unequal access to services. Matthew argued that services cannot fully understand these challenges without involving the people who experience them every day. He encouraged carers to recognise that their experiences are not simply personal stories but a form of expertise that should be valued equally alongside professional knowledge when designing, reviewing and improving services.
The presentation concluded with a powerful call for organisations to move beyond consultation towards genuine partnership working. Matthew explained that when co-production is absent, services risk misunderstanding community needs, developing policies that fail to reflect lived experience and missing opportunities to reduce long-standing inequalities. Conversely, meaningful engagement enables carers to become active partners in service improvement, helping organisations build trust with communities, improve cultural responsiveness and design services that are accessible to everyone.
He also highlighted complementary approaches, including the Triangle of Care, Open Dialogue, cultural competence and shared decision-making, all of which reinforce the importance of collaboration between professionals, service users and carers. Matthew ended by encouraging every organisation represented at the forum to ensure that diverse voices are heard throughout the decision-making process, not simply those that are easiest to reach. His closing message resonated throughout the rest of the meeting: meaningful change begins by listening, respecting lived experience and ensuring that carers have a genuine seat at the table whenever mental health services are being designed or improved.
Q&A Highlights
Q: Why is co-production particularly important for ethnic minority carers?
Because carers from minority communities often experience additional barriers including discrimination, cultural misunderstandings and language challenges. Their lived experience helps services recognise issues that routine data alone cannot identify.
Q: What happens when services fail to co-produce?
Participants suggested services become “them and us” organisations where carers feel excluded, policies fail to meet community needs and trust declines.
Bradford District Care NHS Foundation Trust
Bronte Dines-Allen
Bronte Dines-Allen, Reducing Health Inequalities Lead at Bradford District Care NHS Foundation Trust, provided an inspiring overview of the Trust’s journey in implementing the Patient and Carer Race Equality Framework (PCREF). Introducing herself not only as a senior NHS leader but also as someone with lived experience as a family carer supporting her mother with mental ill health, Bronte spoke passionately about the importance of understanding services from both professional and personal perspectives.
She described Bradford as one of the most culturally diverse areas in England, with more than 150 languages spoken across the district and a population representing a wide range of ethnic communities. This rich diversity presents both opportunities and responsibilities for healthcare providers, requiring services to continually adapt, listen and ensure that care is culturally responsive and accessible to everyone. Bronte explained that Bradford’s approach to PCREF has been built around openness and transparency, with the Trust publishing annual progress reports and equality data to demonstrate both achievements and areas where further improvement is needed.
A major focus of Bronte’s presentation was the Trust’s recent “Amplifying Voices” event, which brought together NHS staff, voluntary and community organisations, chaplaincy services, neighbouring NHS Trusts and people with lived experience to discuss health inequalities and mental health care. Rather than concentrating solely on statistics, the event was designed to explore the stories behind the data, recognising that every figure represents a real person, family or community whose experiences deserve to be heard.
Participants shared personal accounts of navigating mental health services, building trust with professionals, overcoming barriers related to culture and language, and the importance of feeling genuinely listened to. Bronte stressed that collecting feedback is only meaningful if organisations demonstrate how that feedback influences future decision-making. One of the most encouraging outcomes of the event was the commitment from senior leaders that the experiences shared would directly inform the Trust’s refreshed organisational strategy, ensuring that health equity and reducing inequalities remain central to future service development.
Looking ahead, Bronte outlined several priorities that will continue to strengthen Bradford’s PCREF programme. These include expanding cultural competency training for staff, increasing awareness of PCREF throughout the organisation, developing educational resources that encourage conversations about race equality, and creating further opportunities for carers to contribute to service improvement.
She acknowledged that the Trust is still early in parts of its journey, particularly in strengthening engagement with carers and improving mechanisms for gathering feedback, but emphasised that genuine progress comes through honesty, collaboration and a willingness to learn from others. During the discussion that followed, delegates praised Bradford’s transparent approach and shared examples of similar work taking place across other NHS Trusts, reinforcing one of the key messages of the forum that improving mental health services is a shared national endeavour. Bronte concluded by reiterating that sustainable change depends upon building trusting relationships with communities, valuing lived experience as expertise and ensuring that carers remain active partners in shaping the future of mental health care.
Q&A Highlights
Q: What specific work is being undertaken with older adults?
Bronte acknowledged that Bradford is still developing this area and welcomed suggestions from carers and other Trusts, emphasising the importance of learning nationally.
Q: How is co-production influencing your work?
The event itself was co-designed with voluntary sector partners and accountability groups, ensuring community voices shaped both the programme and future priorities.
Q: How do you collect meaningful feedback?
Bradford continues improving its feedback systems following technical challenges and is exploring better ways of gathering and acting on carers’ experiences.
Research Presentation
Dr Meghana Kamble
Families of Children with Disabilities: Perspectives from South Asia
Dr M. Kamble from the University of East Anglia presented an insightful overview of an international research project exploring the experiences of South Asian families caring for children and adults with intellectual and developmental disabilities.
The study spans the United Kingdom, India, Sri Lanka and the United States, bringing together the voices of parents, siblings, carers, people with disabilities and professionals to better understand the challenges faced by families across different cultural settings. Dr Kamble explained that despite increasing awareness of health inequalities, the experiences of many ethnic minority families remain underrepresented in both research and service development. The project seeks to address this gap by examining not only access to services but also how cultural beliefs, family dynamics and lived experience influence the support that families receive. Underpinning the research is the principle of family-centred care, recognising that supporting one individual also means understanding and supporting the wider family network that cares for them.
Drawing on early findings from interviews, focus groups and surveys, Dr Kamble highlighted several recurring themes that resonated strongly with delegates at the forum. Families consistently reported difficulties accessing culturally appropriate services, navigating complex health and social care systems, and finding professionals who understood the realities of their lived experience. Stigma, social isolation and language barriers were frequently identified as obstacles that prevented families from seeking support at an early stage.
One particularly interesting finding challenged common assumptions about South Asian communities. While it is often believed that extended family networks naturally provide substantial support, many participants described relying far more heavily on peer support groups, community organisations and voluntary sector services than on relatives. Dr Kamble also observed that outside Europe many people do not identify themselves as “carers” in the formal sense; instead, they simply see themselves as sons, daughters, brothers or sisters fulfilling their family responsibilities. This distinction has important implications for how services identify and engage people who may be eligible for support but never recognise themselves under the label of “carer.”
The discussion following the presentation explored how research findings can influence future policy and practice. Delegates highlighted the need for clearer information about carers’ rights, improved communication with communities and greater transparency from statutory services about the support that is available. Several participants emphasised that trust can only be built when organisations consistently involve communities in decision-making and demonstrate that lived experience genuinely shapes service improvements. Dr Kamble agreed that while systems and policies are important, individual professionals often make the greatest difference by taking the time to guide families through complex services and helping them understand their rights. Looking ahead, the research team plans to share its findings through publications, webinars, community engagement events and partnerships with organisations across the UK and internationally. The presentation served as a powerful reminder that reducing inequalities requires not only better research but also culturally responsive services that recognise and value the diverse experiences of families from every community.
Q&A Highlights
Q: How will the research findings be shared?
The project plans to publish papers, webinars, newsletters and community engagement events, with researchers keen to work alongside carers in disseminating findings.
Q: How can services better reach ethnic minority carers?
Participants emphasised:
clearer information about rights
better community engagement
trusted local organisations
simpler access to support
transparent communication.
Q: Should organisations rethink the word “carer”?
Yes.
Several delegates suggested that many people never identify with the label “carer,” meaning they may never seek available support. Researchers agreed this requires further exploration.
Nottinghamshire Healthcare NHS Foundation Trust
Ashley Bertie
Accelerating PCREF Implementation
Ashley Bertie, Associate Director for Participation, Co-production and Patient Care Experience at Nottinghamshire Healthcare NHS Foundation Trust, provided an informative update on the Trust’s progress in implementing the Patient and Carer Race Equality Framework (PCREF). Ashley explained that although the Trust recognises there is still much work to do, PCREF has become a strategic priority across the organisation and is helping to drive meaningful cultural change.
Since taking up his role, one of his key objectives has been to accelerate implementation by embedding race equality, co-production and lived experience into the Trust’s everyday work. He described how the organisation has established a comprehensive governance structure, including a PCREF Steering Group chaired by the Chief Nurse, supported by specialist groups focusing on health inequalities, workforce development and lived experience. Importantly, carers, patients, Equality, Diversity and Inclusion (EDI) ambassadors and voluntary sector representatives are all involved in shaping the Trust’s work, demonstrating a commitment to partnership rather than top-down decision making.
Ashley emphasised that improving mental health services cannot be achieved by the NHS working in isolation. A significant part of Nottinghamshire Healthcare’s strategy involves developing strong partnerships with voluntary and community organisations, local authorities, Integrated Care Boards and other NHS Trusts.
He explained that many people from ethnic minority communities have longstanding relationships with trusted community organisations but may be reluctant to engage directly with statutory services due to previous negative experiences or cultural barriers. As a result, the Trust is increasingly taking its engagement activities into local communities, holding events in community centres, places of worship and neighbourhood venues where people already feel comfortable and supported. Alongside this community-based approach, the Trust is investing in cultural capability training for staff, improving transparency through publicly available equality dashboards and developing a new Lived Experience Advisory Group to ensure that carers and service users play a central role in monitoring progress and influencing future service improvements.
Looking ahead, Ashley outlined an ambitious programme of work designed to embed PCREF throughout the organisation over the coming years. Funding secured through NHS England will support a wide range of initiatives, including cultural awareness workshops, staff development programmes, community capacity-building projects and expanded opportunities for people with lived experience to influence recruitment, service design and quality improvement.
One of the Trust’s key ambitions is to ensure that at least 80 per cent of its workforce receives training on the principles of PCREF, helping staff to better understand health inequalities and deliver more culturally responsive care. Throughout his presentation, Ashley reinforced the importance of meeting communities where they are, listening carefully to lived experience and building relationships based on trust rather than assumptions. His presentation reflected the wider theme of the forum: that lasting improvements in mental health services depend upon genuine collaboration between professionals, carers, service users and the communities they serve.
Q&A Highlights
Q: Why are community partnerships so important?
Ashley explained that local organisations often have trusted relationships with communities that NHS services may not yet possess.
Q: How will Nottinghamshire involve carers?
Through a new Lived Experience Advisory Group, strengthened co-production arrangements and wider involvement in service design, recruitment and evaluation.
King’s College London
Ida Doherty
Supporting Ethnic Carers in South West London
Although this presentation formed part of the meeting agenda, discussion focused on ongoing work supporting ethnic carers across South West London through research and partnership working. The emphasis was on better understanding carers’ experiences and ensuring that future services are informed directly by those experiences.
More on her talk will be for the next forum due to time.
Looking Ahead
The National Ethnic Mental Health Carer Forum continues to provide a valuable national platform where carers, researchers, NHS Trusts and community organisations can learn from one another.
The discussions demonstrated that progress is being made through PCREF, research and community partnerships, but also recognised that significant challenges remain.
Moving forward, success will depend on maintaining the principles that underpinned every presentation:
listening before acting
valuing lived experience
strengthening trust
improving cultural responsiveness
ensuring carers remain genuine partners in shaping mental health services.
The forum closed with networking and an invitation for organisations across England to continue sharing good practice, supporting one another and working collectively to reduce inequalities in mental health care.
By Matthew McKenzie – Carer, Campaigner, Author and Speaker
5 June 2026 – Supporting Kent County Council’s Carer Awareness Campaign
Although not officially part of Carers Week, my activities with Kent County Council formed an important part of my ongoing commitment to raising awareness of unpaid carers. I supported the county’s long-term carer awareness campaign by taking part in filming designed to help train council staff to better recognise and support carers.
I also discussed future opportunities to speak at Kent County Council carer groups and continued promoting my own support groups across the county. It was encouraging to see local government investing in carer awareness and recognising the importance of ensuring carers are identified, valued and supported within their communities.
9 June 2026 – Developed Video promotion for Carers Week 2026
I did my bit to raise awareness of Carers Week 2026 via a video I developed, which you can see below.
8 June 2026 – Carers Week Stall at St George’s University Hospital
Carers Week officially began with a rewarding day at St George’s University Hospital, where I hosted a Carers UK information stall. The event provided an opportunity to engage directly with unpaid carers, patients, hospital staff and visitors, sharing information about the support available to carers both locally and nationally.
I was particularly pleased to see the hospital’s dedicated carers information board, which demonstrated a clear commitment to recognising and supporting unpaid carers. Throughout the day, I spoke with many people who were caring for family members and helped raise awareness of carers’ rights, available services and the importance of seeking support. It was a positive start to Carers Week and highlighted the vital role healthcare settings can play in identifying and supporting carers.
10 June 2026 – Ealing Carers Week Celebration at Perceval House
On 10 June, I attended the Carers Week Celebration 2026 at Perceval House in Ealing, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council. As someone who supports both of my elderly parents, I understand first-hand the rewards and challenges of caring. During the event, I had the privilege of hosting a Carers UK information stall while also attending as a carer, poet and author.
The day brought together carers, charities, community organisations, health professionals and council representatives in a welcoming and supportive environment.
Carers had access to information, advice and wellbeing activities, including complimentary refreshments, free manicures provided by Uxbridge College students, artwork exhibitions and opportunities to connect with others who understand the caring journey. The event served as a powerful reminder that carers matter, their voices are important and they should never feel alone.
You can find out more about the event below from Ealing Local Community news
10 June 2026 – Carers Week Parliamentary Drop-In Event, Westminster
Later that day, I attended the Carers Week Parliamentary Drop-In Event at Portcullis House, Westminster. The event brought together unpaid carers, carers’ organisations, MPs and Peers to discuss the realities of caring and the support carers need.
Designed as a speed-networking event, it offered an important platform for carers to share their experiences directly with policymakers and raise awareness of both the immense contribution carers make and the challenges they face. It was encouraging to see parliamentarians engaging with carers and supporter organisations, demonstrating a growing recognition of the need for stronger policies and greater support for unpaid carers across the country.
11 June 2026 – East Sussex Carers Voices Event, East Dean Village Hall
As part of Carers Week, I travelled to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, NHS representatives, local authority leaders, health professionals, carers’ organisations and community groups to discuss how support for carers can be improved.
Hosted by Dr Neil Churchill, Chair of Care for the Carers along with Jennifer Twist CEO of Care For The Carers, the day focused on listening to carers’ experiences and ensuring their voices were heard by decision-makers.
I was honoured to contribute to these discussions and to share insights from my own caring journey. The event demonstrated the value of bringing carers and professionals together to shape services and create positive change for unpaid carers across East Sussex.
12 June 2026 – Speaking at the Cygnet National Carers Event
On 12 June, I had the privilege of speaking at the Cygnet National Carers Event in London as Cygnet’s PCREF Carer Lead, Carer Network Ambassador and carer author. The event brought together carers, healthcare professionals and sector leaders to celebrate carers and discuss the support they need. I shared my experiences as a lifelong carer and highlighted the importance of recognising carers as equal partners in care.
It was inspiring to hear from a diverse range of speakers, including experts by experience, researchers, advocates and service leaders, all united by a shared commitment to improving outcomes for carers. The event reinforced the importance of lived experience in shaping services and ensuring carers’ voices remain central to policy and practice.
13 June 2026 – Carers Community and Support Day at Wells Park Practice
I concluded Carers Week 2026 by hosting a carers information stall alongside Wendy (who is also a devoted carer campaigner at our Lewisham group) at Wells Park Practice during their Carers Community and Support Day.
The event celebrated carers within the local community and provided an opportunity for unpaid carers to access information, advice and support in a relaxed and welcoming environment.
Throughout the afternoon, I spoke with carers about the challenges they face and the services available to help them. The event also highlighted the importance of building a carer-friendly community by recognising carers, understanding the realities of caring and empowering carers to live fulfilling lives. It was a fitting way to end a busy and rewarding week dedicated to championing carers and raising awareness of their invaluable contribution to society.
Reflection
Carers Week 2026 was an incredibly busy and meaningful week, providing opportunities to raise awareness, influence decision-makers, support carers directly and celebrate the extraordinary contribution that unpaid carers make every day.
From hospitals and GP surgeries to Parliament, local authorities and national conferences, the message remained the same: carers are essential, carers deserve recognition and carers must be supported. I am proud to have contributed to so many events throughout the week and remain committed to ensuring that carers’ voices continue to be heard long after Carers Week has ended.
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.
A Caring Mind 