By Matthew McKenzie – Facilitator of Cancer Caregiver group
Welcome to the October update from my National Cancer Caregiver Forum, reflecting on our meeting held on 30 September.
I chair this forum to help bring greater attention to the experiences of people supporting someone living with cancer. Cancer care can involve a whirlwind of appointments, investigations, treatment decisions and changes at home. Behind all of this, family members, partners and friends often provide considerable practical and emotional support.
By Matthew McKenzie – Carer Activist and Carer Advocate
On 8 September 2026, I had the honour of attending the DUALITY event at King’s College London, held at Bush House.
The event was a research and public/community engagement event connected to the INTERCEPTION study, based in King’s Department of Global Health & Social Medicine, within the School of Global Affairs / Faculty of Social Science & Public Policy.
There was a packed agenda, which I have shown below.
Registration, refreshments and photo exhibition — Attendees arrived, had refreshments and had an opportunity to look around the community photography exhibition.
Welcome and introduction to DUALITY — The organisers introduced the event and its focus on ageing, ethnicity, health and experiences of living with multiple long-term conditions.
Research Panel: Ethnicity, Ageing and Health — Researchers discussed work exploring inequalities and experiences at the intersection of ethnicity, ageing, health and multiple long-term conditions.
King’s Sport & Wellness energiser — Attendees were invited to take part in accessible seated stretches and movement exercises.
Human Library — Attendees could “borrow” Living Books for short conversations, hearing personal stories intended to build understanding, foster empathy and challenge assumptions. My Living Book was “The Carer They Didn’t See.”
Community information booths — Organisations and community representatives provided information and resources. This was also where I supported the Carers UK stall.
DUALITY Photography Exhibition — Photographs used visual storytelling to explore support, health, ageing and lived experience. My photograph “The Carer They Didn’t See” was included in the exhibition.
Photography Competition Awards — Winners of the DUALITY Photography Competition were announced, with “The Carer They Didn’t See” selected as one of the winning entries.
Creative performance — The programme included a creative lived-experience performance exploring identity, Caribbean heritage, racism, family, memory and culture.
Keeping Fit with Multiple Long-Term Conditions — This discussion brought professional and lived-experience perspectives together to explore chronic conditions, exercise, confidence and wellbeing.
Dinner and networking — The evening concluded with food and an opportunity for attendees, researchers, community groups and people with lived experience to connect.
This was quite a different event for me. I have attended many conferences, workshops and involvement events over the years as an unpaid carer, carer advocate and speaker. This time, however, I wasn’t simply attending or presenting.
By Matthew McKenzie – Facilitator of Cancer Caregiver group
It has been a long while since I published a full update from my National Cancer Caregiver Forum. Although I have continued working to raise awareness of unpaid cancer caregiving, this latest meeting reminded me why the forum remains so necessary.
The National Cancer Caregiver Forum provides an online space for people caring for someone affected by cancer, former carers, researchers and organisations interested in improving support. It combines peer support with engagement, research and opportunities to influence cancer services.
Why cancer caregivers still need a voice
I opened the forum by reflecting on the shortage of dedicated groups for unpaid cancer carers. There are many services and support groups for people receiving cancer treatment, as there should be, but far fewer spaces focused specifically on the partners, relatives and friends supporting them.
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.
On 4th December 2025, I had the privilege of attending the Service of Christmas Carols and Readings for Carers UK (for their 60th anniversary) at The King’s Chapel of the Savoy.
As many will know, Carers UK is a national charity that offers advice, information, and advocacy for unpaid carers, people who look after a family member or friend due to illness, disability, mental health challenges or frailty.
Their work is vital and ranges from campaigning for carers’ rights, to shaping policy, to providing emotional and practical support.
As someone who has spent years amplifying carers’ voices, and as someone who has been a carer myself, I always find moments like this grounding. They remind me that carers are so often hidden and deserve spaces of recognition, reflection, and community.
I couldnt capture the whole event, so a lot of it is from memory,
The King’s Chapel of the Savoy, with its royal heritage and intimate atmosphere, felt like the perfect place for such a service. The carved wood, the vivid ceiling, the echo of voices old and new it all contributed to an environment where carers could feel honoured rather than overlooked.
A Service That Told carer Stories
The order of service blended scripture, poetry, classic carols, and carers’ own words. Each part spoke to a different dimension of caring, love, sacrifice, resilience, loss, hope.
Here is a clear, concise list of the Carers UK Christmas Carol Service Order, based on the programme you shared.
Some of the order of Service – Carers UK Christmas Carols and Readings
Carol – Once in Royal David’s City
Welcome & The Bidding Prayer by The Revd Canon Thomas Woodhouse MA
Welcome on Behalf of Carers UK by Helen Walker, Chief Executive
Gospel According to Luke, Chapter 2, Verses 8–20 Reader: Rt Hon Sir Ed Davey MP
Reading – Gospel According to Luke, Chapter 2, Verses 1–7, Reader: The Rt Rev Rob Wickham
Reading – Extract from A Christmas Carol, Reader: Jaycee La Bouche, a carer
The Blessing by The Revd Canon Thomas Woodhouse MA
Below are some reflections on the elements that struck me the most, based on the transcript provided.
I started noting down things when hearing the classic Clement Clarke Moore poem brought a sense of nostalgia and gentleness. For many carers, Christmas isn’t always restful, it can be emotionally heavy or practically demanding. Yet this reading reminded me of the grounding power of tradition.
There was also a Carer’s Poem – “I Carried Him” (Martin Seare), which was read by Tiggy Walker. The poem captured something familiar to many carers, which is the sense of being the energy source behind someone else’s survival. The feeling of being nurse, advocate, motivator, protector, and emotional anchor, all at once.
Jaycee’s reading from A Christmas Carol brought a heartfelt authenticity to the service, grounding Dickens’ message of compassion in real lived experience. Hearing a carer deliver those words reminded me how powerfully stories of renewal that echo the emotional journeys many carers navigate every day.
We also heard an extract from A Christmas Carol, where hearing Dickens’ words about Scrooge’s transformation felt fitting. Carers often live in a world full of systems that need to “wake up” to their realities, these systems overdue for compassion and change.
There was another Carer’s Poem – “Hands That Once Held Me” (Aaliyah O’Neill), which was read by Pippa Haywood. This poem honoured the emotional labour that accompanies caring, the grief, the patience, the love that persists through fading timelines and shifting identities.
Walking around after the service, we were provided with wine and mince pies (I could only handle one glass of mine), but ate a lot of mince pies. I also noticed on a nearby table, beautifully wrapped with red ribbon, were copies of books written by individuals deeply connected to the world of caring.
Tiggy Walker’s Both Sides Now offered a tender, candid exploration of love, loss, and the emotional realities of caring, while Why I Care highlighted personal reflections on the value and challenges of supporting others by Sir Ed Davy. Seeing these books at the event felt fitting, they extended the service’s message by giving carers stories they could see themselves in, learn from, and feel strengthened by.
Carols – Collective Voice, Collective Strength
Carols like “Once in Royal David’s City,” “O Little Town of Bethlehem,” “In the Bleak Midwinter,” “O Come All Ye Faithful,” and “Hark the Herald Angels Sing” took on added meaning.
Singing these in chapel reminded me that carers often feel alone, but they are part of a much larger story. Carols have always been about shared experience, hope, and unity. That unity was felt strongly throughout the chapel.
A Blessing for Carers
Towards the end, The Revd Canon Thomas Woodhouse offered prayers acknowledging:
those who care
those who are cared for
those who grieve
those who find joy in service
those who struggle silently
What the Service Meant to Me as a Carer
I left the event feeling the followng:
Being Seen
Carers rarely hear their stories reflected back to them with such respect. This service did that.
Connected
Being surrounded by fellow carers, supporters, faith leaders, and advocates reminded me that we are not navigating these challenges alone.
Renewed
Christmas can be difficult for many carers, i am running a few carer groups to reduce isolation, but this service offered a moment to pause, reflect, and recharge spiritually and emotionally.
Motivated
Each poem and reading reinforced why I continue to campaign and raise awareness: because carers’ lives, struggles, and contributions must be brought into public consciousness.
Final Thoughts
The Carers UK Christmas Service wasn’t just a festive gathering, it was a space that lifted the voices and experiences of carers into the light.
Carers UK continues to be a champion for those who give so much of themselves. And events like this remind us that recognition, community, and hope are powerful gifts.
I left the chapel gratefull for the stories shared, for the solidarity felt, and for the reminder that carers are, and always have been, at the heart of what makes our communities truly compassionate.
BONUS : A small tour of the chapel.
History in the Woodwork: Discovering the Stories Behind the Savoy Chapel’s Symbols
One unexpected part of attending the Carers UK Christmas Service at The King’s Chapel of the Savoy was the opportunity to explore some of the chapel’s remarkable historical artefacts. As a carer and someone who works in carer advocacy, I often reflect on continuity on how the past shapes the present. Walking around the chapel, I realised the walls were not just decorative; they were storytellers.
These objects and emblems remind us that the Savoy Chapel is a living part of royal, national, and personal history. And in many ways, the quiet endurance reflected in these items echoes the resilience of carers across the country.
1. The Heraldic Plaques on the Chapel Walls
Along the wooden panelled walls were beautifully detailed heraldic plaques, each representing past members or senior figures associated with the Royal Victorian Order or individuals linked to the chapel’s long history of royal service.
The Royal Victorian Order was established in 1896 by Queen Victoria as a way of personally recognising service to the monarch. That personal element, service based on loyalty, commitment, and relationship. That i felt especially meaningful as someone attending the Carers UK event.
Each plaque typically includes:
A coat of arms, with symbols representing the individual’s heritage, achievements, or values.
A Latin motto, often referencing duty, honour, or faith.
A record of rank or title, showing how the person was tied to the Crown or Order.
Standing before these plaques, I was reminded that service, whether to the Crown or to a loved one is always part of a bigger human story.
2. The Book of Remembrance
Displayed under protective glass, the Book of Remembrance is one of the most moving artefacts in the Savoy Chapel. It is handwritten and illuminated in a traditional style, much like medieval manuscripts.
The book honours individuals connected to the chapel, recording their names, contributions, and sometimes short dedications. Every entry is crafted with care, respecting the memory of those who served their communities or the Royal Household.
3. The Stalls with Coats of Arms of Officers and Servants of the Order
In the choir stalls, more coats of arms decorate the woodwork. These represent officers, registrars, chaplains, and others who have served the Royal Victorian Order over the decades.
Each shield is different, but together they form a visual tapestry of dedication. They signal continuity across generations much like how caring roles pass through families, communities, and time.
You can almost imagine the individuals who once occupied these seats, each carrying out their duties with diligence. Their heraldry remains here as a testament to lives spent in service.
4. The Mantle and Insignia of a Knight Grand Cross of the Royal Victorian Order
One of the most striking displays was the ceremonial mantle worn by a Knight Grand Cross of the Royal Victorian Order (GCVO). The deep blue and crimson robe, gold tassels, and the star emblem reflect the highest grade of this honour.
The mantle’s presence is not merely decorative:
The GCVO is awarded personally by the monarch, not via government recommendation.
It recognises exceptional service to the Crown.
The Star, Badge, and Collar each represent centuries-old tradition.
5. The Royal Victorian Order and Medal Display
This framed display explains the different grades of the Royal Victorian Order (RVO) and shows examples of the insignia, including:
Knight/Dame Grand Cross (GCVO)
Knight/Dame Commander (KCVO/DCVO)
Commander (CVO)
Lieutenant (LVO)
Member (MVO)
Royal Victorian Medal (RVM) in Gold, Silver, and Bronze
The RVM is unique because it honours personal service by staff who support the Royal Household directly, often throughout a lifetime. The photos in the display include historical figures wearing the ribbons and badges, underscoring the order’s strong ties to loyalty and lifelong commitment.
Why These Artefacts Mattered at a Carers Event
These historical items weren’t just museum pieces; they told a story of service, loyalty, remembrance, and quiet strength. I think in that sense, they perfectly framed the Carers UK Christmas Service.
On Thursday 20th November, I had the privilege of attending and speaking at the Memory, Wellbeing and Brain Health event hosted at Broadfield Community Centre in Crawley. Organised by Carers Support West Sussex, the event formed part of Carers Rights Day, bringing together carers, professionals, community teams, and people living with dementia for a day of learning, connection, and support.
Although I couldn’t stay for the full programme due to travelling to another Carers Rights Day engagement later that afternoon, I was grateful to take part in the early sessions and witness the energy and compassion that shaped the whole day.
By Matthew McKenzie FRSA BEM – Triangle of Care community chair
As a carer living in Lewisham, I know just how important it is that our voices are heard and that the support available truly meets our needs. Whether we’re looking after a parent, a partner, a child, or a friend, we all share the same challenges balancing care responsibilities, work, our own wellbeing, and often feeling invisible in the process.
That’s why I wanted to share something that directly affects all of us. Lewisham Council and the NHS South East London ICB are currently developing a new Action Plan for Unpaid Carers (2025–2028). This plan will set out how the Council aims to identify, value, and support more carers over the next few years.
The team leading this work, including a new member who recently joined the Adults Integrated Commissioning Team, is reaching out to carers across the borough to get our feedback.
The recent Carers Forum brought together unpaid carers, health professionals, and community organisations from across South London to share updates, experiences, and ideas for improving mental health support. The event, chaired by Matthew McKenzie, created a safe and open space for carers to connect, exchange information, and have their questions heard by local health leaders.
Setting the Scene
Matthew opened the session by welcoming carers from across Lambeth, Lewisham, and Southwark. He spoke about the importance of providing carers with dedicated time to hear from service providers, particularly those supporting someone with mental ill-health and to ensure their voices shape local mental health strategies.
On Friday 12th September 2025, I had the privilege of attending Abilities Development’s Awards Night: Celebrating Unpaid Carers at The Grange in London. The event was a moving and powerful reminder of the sacrifices, love, and resilience shown by unpaid carers across our communities.
The event was hosted by founder Dr Karen May, who spoke passionately about the vision to celebrate and support unpaid carers. The evening also included tributes from fellow carers sharing their lived experiences, moving reflections on the sacrifices and strength carers show daily, and recognition from community leaders.
As many of you know, unpaid carers often go unseen, their daily contributions hidden behind closed doors. Yet they carry the heavy responsibilities of looking after loved ones with compassion and strength, often without formal recognition. This event was different, it put carers at the centre, reminding us all that their efforts matter and deserve to be celebrated.
We were given a tour of the facilities available for unpaid carers and their loved ones to us.
One of the highlights of the evening was the presentation of awards and certificates to unpaid carers. Each recipient was honoured with a Certificate of Honour in Caregiving, recognising their unconditional love, tireless dedication, and the invaluable role they play in supporting their loved ones without financial reward or formal recognition.
The evening, attended by the Mayor of Brent and other distinguished guests, was filled with speeches that spoke to the heart of caregiving, its challenges, its emotional toll, but also its incredible strength. One message that stood out was that carers must not forget their own worth and wellbeing. As was beautifully said on the night: “You are important. Take moments for yourself so you can rejuvenate, be well, and stay healthy.”
I was truly honoured to receive a Certificate of Honour in Caregiving myself. This certificate recognised the unconditional love and tireless dedication of carers who, without pay or recognition, give their heart, time, and energy to provide comfort, dignity, and hope. Holding it in my hands was not just a personal moment of pride, but also a reminder of the countless carers whose work too often goes unnoticed
Events like these are not “just another event.” They are opportunities to create legacies and spaces where carers are not only seen but also valued, uplifted, and supported. They are about passing on the message to future generations that caring is not a burden, but a profound act of humanity.
As someone who has long campaigned for carers’ voices, I want to encourage others to support, promote, and attend events like this. Whether it’s through organisations like Abilities Development, local carer networks, or even small community groups, recognising unpaid carers is vital.
To every unpaid carer reading this: you are a quiet hero. Every sleepless night, every whispered prayer, every act of kindness you show it matters. You matter.
Carers can book to use The Grange by contacting Abilities Development directly. Whether it’s for a quiet space to reflect, joining a carers’ group, or making use of tailored support services, The Grange offers a safe environment built around compassion and community.
As the NHS looks to the future with its ambitious 10-Year Plan, one critical group continues to be overlooked cancer carers, although I am not forgetting Mental Health carers. These are the unpaid family members, friends, and loved ones who provide essential care and emotional support to people living with cancer.
While the plan addresses key priorities like digitalization and community-based health reform, it fails to fully recognize the vital role of caregivers in our healthcare ecosystem.
The blog is a transcript of my video, which you can watch below.
Reform Through Inclusion
The NHS 10-Year Plan aims to reshape health services by emphasizing digital tools, preventive care, and stronger local networks.
These initiatives are undoubtedly important. But without recognizing and integrating the contributions of cancer caregivers, the plan risks missing a vital component of patient care.
The Invisible Workforce
Caregivers are often the unsung heroes of cancer care. They manage appointments, administer medications, provide emotional support, and serve as advocates all while coping with their own mental and physical toll.
Challenges Faced by Cancer Carers:
Mental Health Impacts: The stress, anxiety, and emotional burden can be overwhelming.
Decision Fatigue: Carers are often thrust into complex medical decision-making without adequate support or guidance.
Lack of Recognition: Despite their contributions, caregivers are rarely acknowledged as part of the healthcare team.
A Call for Systemic Change
The inclusion of carers in healthcare reform isn’t just an ethical necessity it’s a strategic imperative. By empowering carers, we enhance patient outcomes, reduce strain on NHS services, and promote more holistic care.
Recommendations for Inclusion:
Training for Carers: Equip caregivers with tools to better navigate health systems and support patient needs.
Support Services: Invest in respite care, mental health support, and caregiver-specific community services.
Recognition in Policy: Classify caregivers as essential stakeholders in healthcare planning and delivery.
Co-Production: Designing Services With Carers
One of the most powerful messages from the discussion is the importance of co-production. That means actively involving carers in designing and shaping NHS services not just consulting them after the fact.
Co-Production Actions:
Involve Carers in Service Design: Make caregiver feedback a routine part of NHS planning.
Policy Advocacy: Push for legal and procedural reforms that recognize the role of carers from day one.
The Road Ahead
Cancer caregivers are not just a support system they are key partners in the healthcare journey. If the NHS truly seeks to build a more inclusive, responsive, and sustainable health system, caregivers must be central to its 10-Year Plan.
Let’s stop treating caregivers as an afterthought. Let’s make them co-creators of the future of care.
Support Sites for Cancer Carers
1. Carers UK
Provides advice, online forums, factsheets, and rights information for unpaid carers across the UK. https://www.carersuk.org
2. Carers Trust
Supports a network of local carer organisations across the UK. Offers practical help, grants, and local service finders. https://www.carers.org
A network of cancer support centres offering free emotional, psychological, and practical support to anyone affected by cancer—including carers. https://www.maggies.org
