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.
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.
For Carers Week 2026, it takes place from 8–14 June and shines a spotlight on the millions of unpaid carers who provide essential care and support to family members, friends and loved ones throughout the UK.
This year’s theme, Building Carer Friendly Communities, highlights the need for workplaces, healthcare services, schools, local authorities and communities to better recognise and support unpaid carers.
Despite contributing billions of pounds worth of care each year, many unpaid carers continue to face challenges including financial hardship, social isolation, poor mental health and difficulties accessing support. So Carers Week aims to raise awareness of these issues while encouraging practical action to create a society where carers are valued, respected and included.
As a carer activist and founder of my site A Caring Mind, I am sure that creating carer-friendly communities starts with understanding the realities of caring. Whether you are caring for an ageing parent, a disabled child, a partner with a long-term condition or someone experiencing mental ill health, carers play a vital role in keeping families and communities together.
However, there are still many people do not identify themselves as carers and therefore miss out on important support, benefits and services. Carers Week 2026 provides an opportunity for individuals, organisations and policymakers to listen to carers’ experiences, champion carers’ rights and improve access to support for unpaid carers across the UK.
Watch my Carers Week 2026 video below to learn more about the campaign, this year’s theme and how you can get involved in supporting unpaid carers. Please share the video to help raise awareness and encourage more people to recognise the invaluable contribution that carers make every single day.
Together, we can build stronger, more inclusive and more carer-friendly communities
By Matthew McKenzie – Chair of the Carers Hospital Discharge group
Hospital discharge remains one of the most critical and stressful moments for unpaid carers, patients and healthcare professionals alike. During the recent Carers Hospital Discharge Group meeting held in May 2026, professionals, carers, NHS leaders, hospital representatives and community organisations came together to discuss major developments affecting carers across London and beyond.
The Carers Hospital Discharge meeting runs every 2 months and for the month of May we discussed improving hospital discharge processes, strengthening carer identification, digital inclusion, community support and the growing role of technology in healthcare planning.
The blog update is for those unable to attend, here is a summary of the key discussions, presentations, questions and responses shared during the session.
Universal Care Plan Expansion Through the NHS App
One of the biggest updates came from NHS England, who shared exciting news about the expansion of the Universal Care Plan (UCP).
The new development allows patients and members of the public to begin creating their own Universal Care Plans directly through the NHS App. Previously, only clinicians could initiate many aspects of these plans.
NHS England explained that editable sections now include areas such as:
“What matters to me”
Communication preferences
Care and contingency plans
Personal support needs
Clinical sections, however, remain under healthcare professional control.
Updates described the project as a major milestone after years of discussion about allowing people greater control over their own care information.
Question from attendee:
“Will carers be able to input on behalf of their cared-for person?”
response from presenter:
At present, carers cannot directly complete plans on behalf of another person due to safeguarding and proxy access concerns. However, carers can still complete their own care contingency plans within the system.
It was explained that this means if a carer suddenly becomes unable to provide care, emergency services and healthcare providers would be alerted that a contingency plan exists.
They also noted that community organisations could potentially support individuals with completing plans, provided appropriate governance and data security arrangements are in place.
The discussion highlighted both the opportunities and challenges of balancing digital access with safeguarding responsibilities
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For more developments on the Universal Care PLan, I have provided the link below of the recent Webinar
New Research on Social Networks and Healthcare Support
Matthew McKenzie introduced an emerging research project led by Queen Mary University of London alongside several major universities including Harvard, Oxford and Warwick.
The project aims to explore how patients’ social support networks influence health outcomes, hospital admissions and long-term wellbeing.
Researchers are developing tools to map patients’ support systems, including:
Family carers
Friends
Peer groups
Community support
Online social networks
The project seeks to better understand how strong support systems can improve self-management and reduce avoidable hospital admissions.
Matthew explained that researchers are particularly interested in understanding:
Whether support network mapping would feel helpful or intrusive
How carers should be recognised within healthcare systems
How cultural differences affect support networks
What safeguards around privacy and consent are needed
The proposal sparked interest among attendees because it reflects a wider NHS shift toward community-based care and prevention.
NHS England connected the project to wider work around “family group conferencing,” where whole-family approaches are used to plan care and support more collaboratively.
NHS England’s Urgent and Emergency Care Strategy 2025/26
A major section of the meeting focused on NHS England’s emerging Urgent and Emergency Care (UEC) Strategy.
Matthew presented some notes on NHS England UEC outlining plans to:
Reduce avoidable hospital admissions
Deliver more care within communities
Expand digital healthcare access
Improve hospital discharge pathways
Strengthen operational efficiency
Key proposals included:
AI-enabled triage systems
NHS App navigation tools
Digitally coordinated urgent care
Expanded community-based treatment
Greater use of early intervention models
However, the discussion quickly moved toward the potential risks associated with rapid digital transformation.
Participants concerns:
Representatives covering Hospitals, raised important concerns about how discharge pressures could negatively affect carers.:
“If somebody urgently needs that hospital bed, the pressure becomes getting people discharged quickly. That may not always leave enough time to identify carers properly.”
They stressed that carer identification should happen throughout the patient journey not only during discharge.
They highlighted opportunities for identification during:
Outpatient appointments
Pre-assessment clinics
Routine hospital interactions
Concerns About Digital Poverty
Another major concern involved digital exclusion.
Participants warned that:
Older people
People with dementia
Individuals without smartphones
People facing poverty
Non-English speakers
Neurodivergent individuals
could all struggle if urgent care becomes too dependent on digital systems.
It was mentioned that meeting carers who still rely entirely on phone calls rather than online platforms and stressed the need for alternative accessible routes into care.
Others agreed and referenced an Equality Impact Assessment linked to the NHS 10-Year Plan, which explores risks around digital inequality and vulnerable groups being left behind.
A major highlight will be the attendance of Sir Ed Davey, who is himself a well-known advocate for unpaid carers due to his own lived experience caring for family members. His involvement is expected to help raise awareness of the challenges carers face daily.
KCN also spoke about Kingston Carers Network’s ongoing efforts to strengthen links with Kingston Hospital. The organisation already receives referrals through the hospital’s carers liaison department, helping unpaid carers access emotional support, information and practical guidance following hospital admissions or discharge.
However, KCN is now trying to expand its presence inside the hospital itself through more direct face-to-face outreach work. Plans are being discussed to establish regular information stands within hospital settings so carers can receive support earlier and more proactively.
KCN explained that while these conversations are progressing, coordinating regular in-hospital outreach remains challenging due to logistical pressures and scheduling issues. Despite this, the organisation continues to work closely with hospital teams to improve visibility and engagement with carers.
Beyond hospital settings, Kingston Carers Network continues to deliver several outreach programmes throughout the borough. Staff regularly attend local groups, community spaces and events to identify carers who may not realise support is available to them.
North Central London Carers Support Project
Eleanor updated the group on work taking place across:
Barnet
Camden
Enfield
Haringey
Islington
The project works in partnership with multiple NHS trusts and carers organisations across North Central London with the aim of creating a more consistent and coordinated approach to identifying and supporting unpaid carers.
At the centre of the programme is the development of a standard operating procedure for carers within hospitals and healthcare settings. The goal is to ensure carers are recognised earlier, referred more efficiently and supported more consistently regardless of which hospital or borough they engage with.
One of the project’s biggest developments has been the creation of a dedicated carers referral website. Eleanor explained that the system is designed to simplify the referral process for healthcare professionals. When a referral is submitted through the portal, the system automatically directs the carer to the appropriate local carers organisation based on their postcode.
The intention is to remove confusion for hospital staff while helping carers access support much faster.
Eleanor described the project as an effort to make support pathways:
Easier for professionals to navigate
More accessible for carers
Better integrated across borough boundaries
Less dependent on individual staff knowledge
A major focus of the project continues to be embedding carer awareness into everyday hospital practice.
Carer Awareness Training Expanding Across Hospitals
The team has made significant progress with carer awareness training sessions delivered across several NHS trusts.
Regular drop-in training sessions are now taking place with:
The Whittington Trust
The Royal Free
North London Mental Health Trust services
Eleanor shared that attendance at some sessions has now exceeded 40 healthcare staff members, which she described as a major success.
The training focuses on:
Identifying unpaid carers earlier
Understanding carers’ rights and needs
Improving referral pathways
Increasing staff confidence when supporting carers
Embedding carer recognition into routine clinical practice
Importantly, the project measures the effectiveness of these sessions using confidence ratings before and after training. Eleanor reported that most staff attending show at least a one- or two-level increase in confidence around identifying and supporting carers after participating.
North Central London’s Focus on Carers Week and Community Engagement
Preparations for Carers Week are also a major priority for the project.
The team plans to host information stalls and awareness events at several hospitals including:
The Whittington Hospital
University College London Hospital (UCLH)
Barnet Hospital
These events aim to:
Raise awareness of unpaid carers
Promote available support services
Encourage hospital staff to make referrals
Help carers connect with local organisations
Lewisham Council Developments
Updates from Lewisham was on the ongoing work taking place across Lewisham to improve support for unpaid carers, particularly through closer collaboration between hospitals, carers organisations and local commissioners.
A major development has been Lewisham Hospital’s involvement in the South East London pilot programme focused on creating a standard operating procedure for carers across NHS trusts. The pilot aims to improve consistency in how carers are identified, supported and referred within hospital settings.
It was explained that Lewisham Hospital has been working closely with Imago, the borough’s commissioned carers support provider, to strengthen partnerships with hospital nursing teams and improve awareness of carers across wards and services.
Particular emphasis is now being placed on:
Increasing carer awareness training
Improving communication between services
Embedding carer identification into routine hospital practice
Strengthening links between healthcare and community support
Inspired by discussions during the meeting, it was also highlighted plans to explore integrating carer identification into regular auditing and review processes within hospital settings similar to initiatives already underway in other trusts.
Redesigning Lewisham’s Future Carers Service
One of the most significant updates involved the redesign of Lewisham’s carers support service model.
They shared that the current commissioned contract for carers services is due to end in January 2027, and work is already underway to shape the next phase of support provision.
Importantly, unpaid carers themselves are playing a central role in developing the new model.
A series of co-production sessions has been held with carers across the borough to ensure their lived experiences directly influence future service design. These discussions are helping shape priorities around:
Access to support
Communication with carers
Outreach and identification
Emotional wellbeing services
Practical support needs
Hospital discharge experiences
The borough hopes to move into procurement for the redesigned service later this year.
Carers Hub Lambeth
Carers Hub Lambeth shared an update on the organisation’s ongoing work supporting unpaid carers across King’s College Hospital and Guy’s and St Thomas’ NHS Foundation Trusts.
Although the current hospital carers project funding has been extended for an additional six months, Jen explained that the programme is now approaching its final phase, with funding currently due to end in September 2026.
As a result, the team’s main focus is now on ensuring hospitals become as self-sufficient as possible in identifying and supporting carers once the dedicated project ends.
Expanding Carer Awareness Training
A major priority for Lambeth Carers Hub is expanding carer awareness training for healthcare professionals.
It was explained that the organisation has:
Increased training sessions from once to twice monthly
Begun arranging bespoke sessions with individual hospital teams
Expanded engagement with primary care networks
Updated training materials to address barriers to carer identification
The training aims to help healthcare staff:
Recognise unpaid carers earlier
Understand carers’ support needs
Improve referral pathways
Build confidence in conversations with carers
Embed carers into routine healthcare practice
Carers Hub Lambeth acknowledged that while training sessions often generate an immediate increase in referrals, maintaining long-term momentum remains challenging.
It was mentioned that a familiar pattern where professionals attend training, referrals increase temporarily, and then gradually reduce again as competing clinical pressures take over.
Because of this, the organisation is now trying to better understand:
Why carers continue to be missed
What barriers staff face in identifying carers
How carer awareness can become part of everyday practice rather than an additional task
This reflects a wider challenge discussed throughout the meeting — ensuring carer support becomes embedded within healthcare systems rather than dependent on individual staff enthusiasm.
Embedding Carer Recognition Into Everyday Hospital Practice
One of the most practical discussions came from GESH update on integrating carers into routine hospital auditing processes.
St George’s and Epsom and St Helier Hospitals are now:
Adding carer identification questions into ward audits
Including carers within routine quality checks
Training volunteers to identify carers on wards
Embedding carers into “business as usual” practice
Wendy also spoke extensively about the NHS “Reasonable Adjustments Digital Flag,” a major NHS initiative designed to ensure patients’ accessibility needs are recognised across services.
The system aims to help hospitals and GP services better identify:
Communication needs
Disabilities
Neurodivergence
Mental health conditions
Carer-related support needs
The long-term goal is for healthcare systems to automatically recognise and share reasonable adjustment requirements across services.
Final Reflections
The meeting demonstrated both optimism and concern about the future direction of health and social care.
There was strong agreement that:
Community-based care is necessary
Earlier intervention can prevent hospital admissions
Carers must be identified earlier
Digital systems offer opportunities
However, participants repeatedly stressed that healthcare transformation must not leave vulnerable people behind.
Carers remain central to safe discharge, patient wellbeing and long-term community support. As NHS services increasingly move toward digital and community-led models, ensuring carers are recognised, supported and included will remain critical.
The next Carers Hospital Discharge Group meeting is expected to take place in July 2026.
By Matthew McKenzie – Carer activist (volunteer of Carers UK)
Last night I attended the Mary Webster Lecture at Apothecaries’ Hall in London, a special event marking Carers UK’s 60th anniversary. As someone who has cared for family members and now volunteers with Carers UK, it was moving to sit among other carers, professionals, and campaigners who have worked so hard for recognition and equality.
The event honoured Reverend Mary Webster, the founder of Carers UK, whose vision decades ago helped lay the foundations for unpaid carers’ rights. Today, as we still fight for equality and understanding, her legacy feels more important than ever.
Setting the Scene
Apothecaries’ Hall is a grand, historic space filled with portraits and a sense of tradition. But it also felt like the right place to discuss change how we can build a future where carers are respected and supported equally. The evening began with warm welcomes and reflections from Helen Walker, Chief Executive of Carers UK. She reminded us that while progress has been made, many unpaid carers still live in poverty, often earning less than the minimum wage for full-time dedication.
Then came the highlight of the evening a talk by The Right Reverend and Right Honourable Dame Sarah Mullally DBE, Bishop of London and recently named Archbishop of Canterbury Designate, in conversation with Baroness Jill Pitkeathley OBE, long-time carer champion and former Carers UK CEO.
Dignity in Caring
Bishop Sarah spoke with warmth and honesty about her journey from nursing to the Church. What struck me most was her story about washing her grandmother’s feet when she was a young nurse, which a simple act that carried deep dignity. She used that image to describe caring itself: often quiet, unseen, but filled with compassion and humanity.
Her message was clear that care is about dignity. Every person, regardless of ability, age, or background, has value. She reminded us that dependency isn’t weakness it’s part of being human. We all depend on others at different points in our lives.
As a Black male carer, that message really resonated. In many of our communities, caring happens quietly, often behind closed doors, without recognition or support. Bishop Sarah’s words reminded me that this invisible work deserves to be seen and respected not just by policy makers, but by society as a whole.
Lessons on Equality and Faith
Baroness Pitkeathley joined Bishop Sarah for a deep conversation about equality today and tomorrow. They reflected on how far carers’ rights have come and how far we still have to go. From health and financial struggles to workplace inequality, many of the same challenges from the 1990s remain today.
Bishop Sarah also spoke about the Church’s Reimagining Care Commission, which calls for a new “covenant of care” a moral agreement between government, communities, and families to share responsibility for those who need care. It’s not just about services, but about values: compassion, respect, and community.
Hearing that from someone soon to become the Archbishop of Canterbury gave me hope. It felt like a recognition that faith, ethics, and social justice must go hand in hand.
Voices from the Floor
The Q&A that followed was emotional and powerful. Carers from the audience spoke up about their struggles housing, mental health, disability, and the loneliness that caring can bring.
One carer shared the pain of fighting for proper housing for her disabled son; another spoke about the toll on her own health. Each voice reminded me that caring is more than statistics it’s real people doing extraordinary things every day, often without support.
My Reflection as a Black Carer Activist
As I looked around the room, I thought of the carers in Black and ethnic minority communities who face extra barriers language, stigma, or fear of not being understood. Too often, our voices are missing from the conversation. I decided to have a chat with Dame Sarah Mullally about my thoughts, still nights like this show that inclusion is possible, and necessary.
Equality for carers means also recognising our diversity on different cultures, faiths, and family structures and ensuring that every carer can access the help they need, without judgement or struggle.
I left the event feeling encouraged but also challenged. Encouraged by the leadership and compassion of women like Bishop Sarah and Baroness Pitkeathley, who continue to champion carers’ rights. Challenged, because the journey isn’t over and each of us, whatever our background, has a role to play.
A Call for Tomorrow
Sixty years after Mary Webster founded Carers UK, unpaid carers are still holding society together.
We save the country billions, yet too many of us live in hardship. As Bishop Sarah said, we must rethink how we value care not as a cost, but as a cornerstone of our humanity.
For me, as a carer activist, that means continuing to speak up, share stories, and bring carers from all communities together. Because equality today and tomorrow starts with being seen, heard, and valued.
