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 – Triangle of Care – Community group chair
Putting Carers at the Centre of Care
The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.
One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.
Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.
Progress Across the Triangle of Care Programme
Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.
Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.
Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.
The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.
Advancing Equality Through the Patient and Carer Race Equality Framework
A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.
PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.
The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.
Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.
Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.
Confidentiality, Information Sharing and Carer Inclusion
Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.
Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.
Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.
Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.
Triangle of Care Principles Within Acute Services
The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.
Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.
Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.
Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.
Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.
Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.
Looking Ahead
The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.
Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.
Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.
The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.
By Matthew McKenzie – Carer and Carers UK Ambassador
As unpaid carers, many of us know what it feels like to operate in the background. We juggle complex health systems, care for our loved ones, and manage our own lives, all too often feeling invisible.
That is why I am excited to share a major milestone for our community.
The Department of Health and Social Care (DHSC), alongside the Departments for Education, Business and Trade, and Work and Pensions has officially launched the Unpaid Carers Action Plan: Recognize, Refer, Reach.
This is England’s first-ever cross-government action plan dedicated entirely to supporting unpaid carers.
I was honored to attend the official launch event to represent our community, meet with Minister for Care Stephen Kinnock MP, and participate in the official DHSC launch video.
This isn’t just another policy document; it is a commitment across multiple government sectors to drive real, practical change.
The plan is built around three core pillars:
1. Recognise
Carers must be identified early. One of the most exciting digital updates is a new “MyCarer” section being introduced on the NHS App, allowing us to easily register our caring role so healthcare staff know who we are from the start.
2. Refer
No carer should have to navigate the system alone. This pillar focuses on making sure we are directed to local carer centres, financial advice, and emotional support early on. Crucially, it aims to ensure we are formally included in major healthcare decisions, like hospital discharge planning.
3. Reach
Caring shouldn’t mean giving up on your own future. For working carers, the plan explores paid carer’s leave and will require large employers (250+ staff) to publish carer support plans from spring 2027. For young carers, it means stronger support within schools so their education doesn’t suffer.
A Message to My Fellow Carers and Carer Centres
For years, we have argued that caring is not just a “health” issue, it impacts our jobs, our education, our finances, and our mental health. Seeing four government departments finally come together to address I feel is a massive step forward.
To my fellow unpaid carers: Please know that using your voice gives you a chance at being heard. It is important to get carers “on the map” to be recognised, and this plan is a direct result of carers sharing their lived experiences.
To Carer Centres and Forums: This action plan is a powerful tool for us. It gives us a framework to hold local services accountable and ensure the “Recognise, Refer, Reach” goals are delivered on the ground.
Of course change doesn’t happen overnight, but this plan gives us a vital foundation to build on. Let’s keep pushing, keep connecting, and make sure every single unpaid carer gets the recognition and support they deserve.
This week (6–12 July) marks Alcohol Awareness Week 2026, organised by Alcohol Change UK. This year’s theme, “Alcohol and Me,” encourages us to take a moment to reflect on our own relationship with alcohol and the impact it can have on our health, mental wellbeing, relationships and everyday lives.
For many unpaid carers supporting someone with a mental health condition, life can be emotionally demanding. While we often focus on the person we care for, it’s just as important to look after our own wellbeing. This campaign reminds us that seeking support, talking openly and making small positive changes can make a real difference.
To support this important awareness week, I’ve created a new video on my YouTube channel, A Caring Mind, exploring why Alcohol Awareness Week matters, particularly for carers and families affected by mental ill health.
If this post resonates with you, please share the video to help raise awareness, reduce stigma and remind carers that their wellbeing matters too.
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.
If you weren’t able to join our June South London Mental Health Carers Group meeting, here’s a summary of the main discussions and updates. As always, the meeting brought together unpaid carers from across Lambeth, Lewisham, Southwark and Croydon to share experiences, raise concerns and keep each other informed about developments affecting mental health carers.
Why these meetings matter
One of the strongest themes throughout the meeting was the importance of carers staying connected. Many carers cannot attend every committee or involvement meeting due to their caring responsibilities, work or other commitments. By sharing updates, we can help ensure everyone remains informed about changes that may affect them and the people they support.
Several carers commented that services sometimes feel like they are “reinventing the wheel”, with the same issues being raised repeatedly. While progress can be slow, continuing to speak up and share experiences remains essential.
Updates from the Maudsley Family and Carers Committee
Carers who attended the latest South London and Maudsley (SLAM) Family and Carers Committee shared several important developments.
Review of the Involvement Register
SLAM is reviewing its Involvement Register over the coming months. Working groups will look at areas including:
Outcomes
How involvement is delivered
Governance and policy
Carers interested in influencing how services engage with families are encouraged to consider joining the register. Participation is flexible, allowing carers to contribute when they are able.
Triangle of Care
The Triangle of Care continues to be a significant focus, particularly around how carers are identified, involved and supported during someone’s mental health care.
Discussions also covered how Trusts monitor their progress and how carers’ details are recorded to ensure families receive appropriate information and support.
Information for carers
Work is continuing to improve the information provided to carers. Rather than relying on a single handbook that can quickly become outdated, there are plans to develop more flexible information resources that can be updated more easily and provided when carers actually need them.
Mental Health Act reforms
A significant part of the meeting focused on the recent changes to the Mental Health Act and what they could mean for unpaid carers.
Key topics included:
Greater emphasis on patient choice and involvement.
The introduction of the Nominated Person, replacing the traditional “Nearest Relative” in many situations.
The importance of Advance Choice Documents, allowing people to record their wishes while they are well.
The need for carers to understand their legal rights and ask questions during admissions, treatment planning and discharge.
Carers discussed both the opportunities and concerns arising from these changes, particularly where someone may lose insight during periods of illness. There was broad agreement that carers need clear information about how the reforms will be implemented locally and how families will continue to be involved.
Advocacy and complaints
Members shared experiences of trying to access advocacy services and navigate complaints processes.
Concerns included:
Limited access to independent mental health advocacy in some boroughs.
Unclear complaints pathways.
The need for carers to be listened to, even when confidential information cannot be shared with them.
The importance of raising concerns through appropriate safeguarding and governance routes where necessary.
Several carers also shared positive experiences where persistence had led to improvements in care.
Local updates from across South London
One of the strengths of the South London Mental Health Carers Group is the opportunity for carers from different boroughs to share what is happening locally. While each area faces its own challenges, many of the issues raised were common across South London.
Lambeth
Carers discussed the continuing work of the Lambeth Living Well Collaborative, which brings together carers, service users, voluntary organisations and professionals to improve local mental health services. Members were reminded that carers are welcome to attend collaborative meetings and contribute to discussions about service improvements.
The conversation also recognised the wider pressures affecting carers beyond mental health services. Rising living costs, reductions in council tax support for many working-age residents receiving benefits, and the increasing financial pressures on families continue to affect carers’ wellbeing. These wider social issues inevitably have an impact on people’s ability to sustain their caring role.
Lewisham
Carers provided an update on Lewisham’s Community Mental Health Transformation programme. While work continues to redesign community services, concerns remain about what happens when someone is discharged from specialist mental health services back to primary care.
Several carers highlighted unanswered questions around:
How GPs will be supported to manage people with ongoing severe mental health needs.
What support carers can expect once specialist services are no longer involved.
Whether communication between secondary mental health services and GP practices is sufficiently robust.
These are important questions that carers hope local services will continue to address as transformation plans progress.
Croydon and Lewisham carer information
Members also heard that new information resources for carers are being developed in Croydon and Lewisham. Rather than relying on lengthy booklets, services are creating a series of practical information sheets covering different aspects of mental health care. This approach should allow information to be updated more regularly and provided when carers need it most.
Carers welcomed this change, noting that people often need specific information at different stages of their caring journey rather than receiving a large handbook all at once.
The important role of GP practices
An interesting discussion focused on the role of GP practices in supporting unpaid carers.
Members recognised that experiences vary considerably between surgeries. Some GP practices have developed strong support for carers, while others still have some way to go.
One positive example shared was Wells Park Practice, where carers have become actively involved in developing support, including helping to establish a regular carers’ coffee morning. This demonstrates what can be achieved when GP practices actively engage with carers and recognise the valuable role they play.
The meeting reinforced several practical messages for carers:
Make sure your GP practice knows that you are an unpaid carer and ask to be recorded on their carers register.
Ask what support your surgery offers to carers, including health checks, referrals or local support groups.
If your current practice offers limited support for carers, it may be worth exploring what neighbouring GP practices provide, particularly if they have developed a stronger carers programme.
As community mental health services increasingly work alongside primary care, ensuring that GP practices recognise and support unpaid carers is becoming more important than ever.
Learning from each other
Perhaps the most valuable part of the local updates was hearing how carers are finding solutions in different boroughs. Good practice in one area can often inspire improvements elsewhere.
Whether discussing carers’ information, community transformation, GP engagement or involvement opportunities, the message was clear: carers’ experiences are a vital source of learning, and sharing those experiences helps improve services across South London as a whole.
Looking ahead
One of the biggest messages from the meeting was that carers have valuable lived experience that services need to hear. Whether through local carers’ centres, involvement registers, Trust committees or community groups, every contribution helps shape future services.
If you are interested in becoming more involved but can only contribute occasionally, don’t let that put you off. Many opportunities allow carers to participate as much or as little as their circumstances allow.
Thank you to everyone who attended and contributed so openly. Your experiences continue to help improve understanding and influence services across South London.
We look forward to welcoming both new and returning carers to our next meeting.
By Matthew McKenzie – member of UCP Lived experience group
Many unpaid carers worry about one question: “What would happen if I suddenly became ill or was unable to provide care?” It is a concern that often sits in the background but can cause enormous anxiety.
A new approach being developed across London aims to provide reassurance and practical support. Through the Universal Care Plan (UCP) and the Carer Contingency Plan (CCP), unpaid carers can record important information and make plans so that the people they care for continue to receive support if circumstances change.
What is a Universal Care Plan?
The Universal Care Plan (UCP) is a secure digital care record used across London. It allows important information to be shared with health and care professionals involved in a person’s care.
The plan records information that matters most to the individual, including:
Health conditions and medical information.
Personal wishes and preferences.
Details about family members and carers.
Important contacts.
Information that can help professionals provide better care.
The UCP can help reduce the need to repeat information and ensures that health and care staff have access to information when it matters most.
People of all ages can have a Universal Care Plan, including both carers and the people they support.
For unpaid carers, one of the most valuable developments is the Carer Contingency Plan (CCP).
The CCP allows carers to record what should happen if they are suddenly unable to continue caring because of illness, an emergency or another unexpected event.
The plan can include:
Emergency contacts.
Information about daily routines.
Medication arrangements.
Communication needs.
Important preferences and wishes.
Details about replacement support or family members who could help.
Having this information available means professionals and family members can respond more quickly and with greater confidence during a crisis.
Why is this important for unpaid carers?
Many carers provide support around the clock and often put their own needs last. Yet emergencies can happen to anyone.
A Carer Contingency Plan can:
Provide peace of mind.
Help avoid unnecessary hospital admissions.
Ensure continuity of care.
Reduce stress during emergencies.
Make carers more visible to health and care services.
Improve communication between professionals and families.
Most importantly, it recognises the crucial role unpaid carers play and helps ensure they are not overlooked.
Accessible and Easy to Use
Universal Care Plans and Carer Contingency Plans are designed to be practical and accessible.
Plans can be created:
In hospitals.
In community services.
Through voluntary sector organisations.
By individuals themselves using the NHS App and NHS digital services.
Support materials and guidance are continuing to expand, making it easier for both professionals and carers to understand and use the system.
Working Together Across Health and Care
The UCP and CCP are being used across hospital, community and voluntary sector settings. Their purpose is simple but powerful: to improve communication, support carers and ensure that important information is available when it is needed most.
For unpaid carers, this represents a positive step forward. Carers have long spoken about wanting greater recognition and reassurance that there is a plan in place should something happen to them. The Carer Contingency Plan helps answer that concern.
A Message to Carers
If you support a family member, partner, friend or neighbour, you are not alone. Your role matters, and planning ahead is not about expecting the worst—it is about providing reassurance and protecting the person you care for.
The Universal Care Plan and Carer Contingency Plan offer a practical way to make your wishes known, improve communication with professionals and ensure that support can continue when it is needed most.
If you would like to know more, speak to your hospital’s carers service, community team, GP practice, local carers organisation or ask a member of your health and care team about the Universal Care Plan and Carer Contingency Plan.
Planning ahead today can bring peace of mind tomorrow for both carers and the people they care for.
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.
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 