Hospital Carer Discharge Meeting – September 2026 Update

By Matthew McKenzie BEM FRSA, Chair of the Carers Hospital Discharge Group

Thanks to Carer Centre representatives, Hospital reps and Local authorites who joined our September Hospital Carer Discharge Meeting. The group brings together unpaid carers, NHS staff, councils and carers organisations to share practical work and improve how carers are recognised and involved when someone leaves hospital.

Our guest speaker was Melanie Crew, Research and Policy Manager at Carers UK. Her presentation gave us a national picture of carers’ experiences, followed by a discussion that brought the issue back to what happens on wards and in local communities.

What carers are telling Carers UK

Melanie explained that Carers UK has asked about hospital discharge in its annual State of Caring survey for several years. The results show little improvement. In its 2025 survey, only 14% of carers said they had been asked about their ability and willingness to provide care when the person they supported was discharged. Melanie also reported that 38% said they had been involved in discharge decisions.

Those figures should concern everyone involved in discharge planning. A carer may be expected to help with medication, mobility, appointments or personal care once someone gets home. Staff need to ask what that person can do, what they feel able to do, and what support they will need. They cannot assume that a family member is available or willing to take on new tasks.

Melanie also highlighted findings from the Care Quality Commission’s inpatient survey: 23% of patients said their family member or carer was not at all involved in discussions about leaving hospital, while a further 19% said they were involved not very much.

Behind these figures are carers trying to prepare for life after discharge, sometimes without enough information about a condition, the equipment needed at home or the care they may be expected to provide. Poor communication can leave both the carer and the person returning home in a difficult position.

Why does good work in hospitals fail to reach some carers?

One of the strongest questions in the discussion came from Richmond Borough Mind. The described hearing from carers who received no discharge information, despite attending meetings where NHS teams reported substantial work on carer identification and support. Why is there such a gap between the initiatives being developed and what carers experience?

There was no single answer. A hospital may have a policy, a carers champion or information packs, but these only help if staff identify the carer, make contact and provide information that fits their situation. A referral to support is valuable, yet it may not meet an immediate need if there is a long wait for a carer’s assessment.

Melanie suggested that services need to look more closely at what happens after identification. Was the carer given information they could use? Did they understand what help was available? Were their concerns addressed before discharge? Could they get advice later as the person’s needs changed?

This is an important distinction for our group. We should measure whether carers receive useful support, as well as whether a process or referral exists.

Identifying carers early and hearing their own feedback

Carers UK would like hospitals to identify carers early, ideally from admission. Some people will have been caring for years; others may have become carers suddenly after an illness or accident. Many will not use the term “unpaid carer” to describe themselves. Staff therefore need to ask clear questions about who provides support and what that support involves.

Melanie also described work examining how the NHS collects and uses feedback from patients, service users and carers. Carers UK is contributing to a project involving the King’s Fund, National Voices, The Foundation and Edge Health. Its message is that carers should be able to describe their own experience as carers, rather than speak only on behalf of the patient.

For example, were they identified? Did they receive enough advice? Were they treated as a partner in care? And when they raised concerns, did anything change? These questions could tell us much more about where a discharge pathway succeeds or breaks down.

National policy and work ahead

Melanie outlined Carers UK’s campaigning on the Health Bill 2026. Carers UK proposed duties for Integrated Care Boards to identify and record unpaid carers and to promote their health and wellbeing, alongside other proposals concerning breaks from caring and access to the Single Patient Record. The proposed duties on identification and wellbeing were not adopted, although Melanie noted support for them across parties. Carers UK intends to continue making the case for stronger action.

The discussion reflected the difficulty local projects can face when carer identification depends heavily on individual staff members or teams. Eleanor, from the North Central London Carer Support Project, described the effort involved in building partnerships with hospital trusts and asked whether a mandatory duty might help make this work more consistent.

Carers UK is also contributing to communities of practice on hospital discharge, supported through the Better Care Fund. Thirty areas are taking part, with Carers UK working with half and Carers Trust with the other half. NHS, council and voluntary sector representatives will share challenges, examples of good practice and possible improvements. Wider webinars are planned so others can learn from the work.

Looking ahead to Carers Rights Day on 19 November, Carers UK plans to publish a report on carer identification across healthcare, councils and employers. Melanie stressed that being recognised as a carer must lead to meaningful information and support.

A practical idea from St George’s, Epsom and St Helier

Wendy shared work underway across St George’s, Epsom and St Helier hospitals. The hospitals have a carers charter, information packs and follow-up calls for identified carers, but Wendy acknowledged that some carers still miss out. Identification on wards remains a challenge.

One proposed response is to develop volunteer roles that can help recognise carers, speak with them and connect them with staff and information. The plan also includes support around discharge. Wendy explained that the teams are working with Helpforce as they develop and recruit for the roles.

The conversation also covered accessibility and reasonable adjustments. For some patients, having their carer alongside them throughout their hospital journey may be essential to communication and care. Wendy described work with safeguarding, learning disability and dementia teams to strengthen this approach, alongside activity concerning Martha’s Rule and John’s Campaign.

Others noted that carers organisations can also be willing to work directly on wards, but need workable routes into hospitals. This is an area where better partnership arrangements could make existing support much easier for carers to reach.

Lewisham and Greenwich: charter, training and support on site

An update from the patient experience team at Lewisham and Greenwich NHS Trust, said the trust plans to review its carers charter with carers and support organisations across Greenwich, Bexley and Lewisham. The aim is to understand different needs and use that feedback to make changes in the hospitals.

They also reported that Queen Elizabeth Hospital has approved catering for carers who are staying in hospital with the person they support. It may sound like a small change, but for someone spending long hours beside a loved one, practical support matters.

Staff training on identifying and supporting carers is also developing at Lewisham Hospital and Queen Elizabeth Hospital, with local carers organisations involved. I welcomed this update and offered to contribute the questions and experiences I hear when I run carer information stalls at Lewisham Hospital.

Southwark Council carers strategy and new service

Representatives from Southwark Council updated the group on their four-year carers strategy, which was approaching sign-off. They plan to develop a delivery group for its action plan and continue involving carers in how the strategy is put into practice.

Sarah also described progress on Southwark’s new carers service. At the time of our meeting, the contract award was going through final internal governance, with a planned contract start date of 1 March and a period for the provider to prepare the service before launch. The proposed model would have a base at Southwark Resource Centre and activities in other community locations. Further launch details will follow from the council.

The discussion prompted a useful commitment to strengthen links between the future carers service, GP practices, social prescribers and other health contacts. Southwark representatives also reflected on the need to explain carers’ assessments in a way that makes their purpose and possible benefits clear to each carer, rather than simply handing out more information.

Lambeth and Richmond updates

Carers’ Hub Lambeth shared difficult news: its funded hospital discharge project was due to end in September because continued funding was unavailable. The team intends to maintain its relationships with King’s College Hospital and Guy’s and St Thomas’, continue carers awareness training, and extend its work with GPs and social prescribers where possible. Its monthly emergency planning workshops will also continue.

This was a reminder that valuable partnerships need sustained support. The learning and relationships built through a project should not disappear when its funding ends.

Richmond Borough Mind described work on a handbook for mental health carers. It will include information about mental health conditions and what happens when the person they support goes into hospital, including discharge. Richmond Borough Mind is also planning a Carers Rights Day gathering that combines support, information and an opportunity for carers to come together.

What I took from the meeting

September’s discussion returned repeatedly to a simple test: does the carer actually know what is happening, what may be expected of them, and where they can get help?

Policies, charters, digital plans, volunteers and training can all contribute. Their value lies in what happens during a real hospital stay: whether someone notices the carer early, listens to their knowledge and concerns, asks about their own capacity, and makes sure they have support before and after discharge.

I was grateful to Melanie for sharing Carers UK’s research and campaigning work, and to every organisation and carer who contributed openly to the discussion. At our next meeting in November, I hope we can hear more about how these local initiatives are progressing and continue learning from carers who have experienced discharge themselves.

Thank you to everyone helping to make this group a place where we can share challenges honestly and work together on practical improvements.

Fear Has Roots – A PCREF Poem About Mistrust, Discrimination and Unpaid Caring

By Matthew McKenzie – Carer poet & Carer Activist

As I continue developing my poetry collection Unpaid, Unseen and Yet Unbroken: Poetry about Ethnic Mental Health Carers, I wanted to share another poem from the collection called Fear Has Roots.

The poem explores something I feel mental health services need to understand more deeply: mistrust does not always begin with the person standing in front of you.

Sometimes it has a history.

A carer may have experienced years of being dismissed, misunderstood or having their concerns minimised. They may have watched other carers from their community struggle to be heard. Experiences of discrimination can also travel through families and communities, influencing how safe people feel when approaching services.

Fear Has Roots explores what happens when those experiences begin to change the way a carer communicates.

The carer starts choosing their words carefully. They worry about appearing angry. They fear being labelled “difficult” or “aggressive”. Even when trying to advocate for someone they love, they may feel that one wrong word could change how professionals see them.

One section of the poem says:

For me, this is particularly important when thinking about ethnic minority carers and the Patient and Carer Race Equality Framework (PCREF).

If services want to build trust with communities, it is not enough simply to ask why somebody mistrusts the system. We also need to ask what happened before that mistrust developed.

Listening to what sits behind the fear

The poem is not anti-professional. In fact, its opening line deliberately makes that clear:

“Fear has roots, I am not anti-professional.”

Instead, it asks professionals and services to become curious about the experiences behind a carer’s behaviour.

Repeated dismissal can wear somebody down. Discrimination can leave lasting memories. Feeling judged when advocating for a loved one can make a carer more cautious the next time they enter a meeting, ward or assessment.

This is why culturally responsive carer involvement matters.

We should not only hear what carers are saying. We should also understand the history, culture and experiences that may sit behind their words.

Fear has roots.

Mistrust has a history.

And perhaps listening is one of the places where rebuilding trust can begin.

Fear Has Roots is part of my developing poetry collection Unpaid, Unseen and Yet Unbroken, which explores race, culture, identity, inequality, resilience and the experiences of ethnic minority unpaid mental health carers.

South West London Mental Health Carers Forum – September 2026 Update

By Matthew McKenzie, Co-Facilitator – South West London Mental Health Carers Forum

Our September forum brought carers together with Nisha from the South West London and St George’s Mental Health NHS Trust Recovery College.

We explored the courses available to carers, how to join them, and a question that matters well beyond the college: what happens when a carer still needs support after a time-limited service ends?

What the Recovery College offers carers

Nisha explained that Recovery College courses are co-produced and delivered by a practitioner trainer alongside a peer trainer with lived experience. The college offers face-to-face courses across Kingston, Richmond, Sutton, Merton and Wandsworth, as well as online learning.

Five online courses run each term specifically for friends, family members and carers: Your Role in Recovery, What Is Recovery?, Responding to Extremes, Planning for Well-being, and Navigating Support Services. Carers who meet the college’s eligibility criteria can also explore its wider range of courses.

We also heard about Navigating the Wards, a newer course for families and carers whose loved one has been admitted to a mental health ward. It brings together practical information, contact with ward staff and a chance to meet others who understand that experience. A carer may need time before feeling ready to attend, so it was reassuring to hear that the course is intended to run again rather than being a one-off opportunity.

Caring does not end after 12 months

The most important discussion came from a carer who had benefited from Recovery College courses but questioned the limit on access after a loved one leaves trust services. Nisha explained that eligible carers can continue to access courses for up to 12 months after discharge, while webinars remain available more widely.

A caring role rarely follows that timetable. Someone may need to pause their learning during a difficult period, return to a course when they are better able to take it in, or seek support years later as circumstances change. A second member also asked about eligibility, showing how relevant this question is to carers trying to find the right help.

Nisha listened to these concerns and said she would take the question of eligibility back for further discussion. She also described work to strengthen links with community and voluntary organisations, so that carers have clearer routes to support when their access to the college ends. It was a constructive exchange, and one we hope can continue.

Members also spoke about how hard it can be to discover support in the first place. Carers should not have to find every course or service by chance while managing an already demanding role. Clear information, accessible formats and active outreach matter, including for carers from ethnic minority communities and people who may face other barriers to taking part.

How carers can take part

Nisha explained that prospective students can look through the Recovery College timetable and complete an online registration form, selecting courses that interest them. The team checks eligibility and confirms a place if one is available; if a course is full, there may be a waiting list. Open days offer a chance to talk through the options, but a registered student does not need to attend an open day each term to book another course. Courses in a different borough may also be an option.

We asked how carers from this forum could help shape future courses. Nisha welcomed continued discussion about carer involvement in course design and delivery. We also talked about sharing information both ways: making more carers aware of the college, and helping people who attend its carer courses find our forum.

A space for carers to connect

At the start of the meeting, I shared a glimpse of a recent carers’ art and poetry session. Creative expression can give carers another way to speak about experiences that are difficult to put into everyday conversation. I would welcome the chance to explore a similar opportunity in South West London with interested carers and local partners.

Thank you to Nisha for joining us and answering members’ questions openly, and to the carers who shared their experiences. Their questions helped move the conversation from a list of courses to the practical issue of whether support remains accessible when carers need it.

The South West London Mental Health Carers Forum meets monthly and welcomes unpaid mental health carers across the five boroughs. Our next meeting is planned for Monday 26 October 2026. To ask about joining, email info@swlondonmhcarers.org.uk.

Black Maternal Mental Health Week 2026: Black Mothers and Unpaid Carers Must Be Heard

By Matthew McKenzie, A Caring Mind

21–27 September 2026 | Joy • Justice • Journey

Black Maternal Mental Health Week is a chance to celebrate Black mothers and speak honestly about the inequalities they can face when seeking support. This year’s theme, Joy • Justice • Journey, reminds us that a mother’s mental health matters before, during and long after birth.

For some Black mothers, asking for help can mean overcoming stigma, cultural misunderstanding, racism or the fear that their concerns will be dismissed. Support needs to arrive early, and services need to listen to what mothers say about their own lives.

I also want to recognise unpaid carers. A partner, parent, sibling or friend may notice when a mother is struggling, help her manage daily life and support her through appointments. Yet carers can feel exhausted or excluded when they try to ask questions. A mother’s wishes and confidentiality must remain central, while the people she trusts should be included in her care when she wants them there.

Black Maternal Mental Health Week UK is founded and led by The Motherhood Group, with Mumbrite supporting this year’s programme. The Motherhood Group is also working with the Maternal Mental Health Alliance and Centre for Mental Health on a separate project examining inequalities in Black maternal mental health care.

I have made a short video reflecting on the week, racial inequalities and the importance of hearing both Black mothers and unpaid carers:

If you are pregnant or have recently given birth and are worried about your mental health, speak to your midwife, health visitor or GP. You can also read the NHS guide to mental health care before, during and after pregnancy. Unpaid carers can contact Carers UK for information and signposting.

The week ends on 27 September, but listening and changing services must continue beyond it. Black mothers deserve care that takes their concerns seriously. Unpaid carers deserve to be heard and supported too.

When a Picture Speaks: Ealing Carers Art and Poetry, September 2026

By Matthew McKenzie – Ealing Carers Poetry Group facilitator

At our September Ealing Carers Poetry Group, we tried something different: bringing drawing and poetry together. I invited carers to sketch something simple, notice the words and feelings it brought to mind, and then write as though the picture could speak.

There was no expectation to be an artist or an experienced poet. A few lines on paper were enough. What mattered was giving carers room to express something important to them.

Draw a moment, write its voice

The drawings included a cup of tea, a bed, a slice of watermelon, a circle, a birthday card, two hands holding one another and a smiling sun. Each became a starting point for a different poem.

A cup of tea brought out the closeness between a carer and her son, and the hope found in sitting together. A drawing of a bed led to a poem about watching someone you care for and wishing you could do more. The green, black and red of a watermelon became a way to describe the daily cycle of caring and the return of brighter moments.

Other poems explored bonds that continue through difficult times, memories held in an old birthday card, the reassurance of holding hands, and the need for carers to find moments of joy and self compassion.

Some drawings were emailed to me; others were held up to the webcam. Even when a picture was difficult to see on screen, the person who made it could tell us what it meant. Hearing each poem in the carer’s own voice added something the image alone could not convey.

The objects we keep close

For a second exercise, I asked carers to choose an everyday object and begin with the idea, “You might think this is just…” A cardigan became a source of comfort. A pen represented both creativity and the practical work of caring. A book of poems, a blanket and an iPad used to play music opened up thoughts about memory, connection and changing emotions.

I was struck by how generously everyone listened. Carers noticed details in one another’s work and offered encouragement. One person found it difficult to write during the exercise, and that was welcome too. Being part of the group does not depend on producing a poem every time.

Watch the carers’ poems and artwork

I have brought the drawings and poems together in a short video so that more people can see what the group created:

Thank you to everyone who drew, wrote, read aloud, listened and supported someone else. The session reminded me that a simple picture can hold a great deal of experience, and that carers deserve space for their own creativity as well as their caring role.

Join us

The Ealing Carers Poetry Group is a welcoming online space for unpaid carers, including mental health carers. You can write, share, or simply come along and listen. Carers from Ealing and beyond are welcome to enquire.

To ask about the next online session, email info@ealingcarerspartnership.org or call 0203 475 9891.

I will also be leading a free in person poetry workshop on Thursday 8 October 2026, 11 am–1 pm, at Ealing Central Library. Places are limited, so please contact Ealing Carers Partnership to register.

World Alzheimer’s Day 2026: Remembering the Carers

To mark World Alzheimer’s Day, I have produced a new A Caring Mind video focusing on the unpaid carers supporting relatives and friends living with Alzheimer’s disease and other forms of dementia.

Alzheimer’s is a progressive neurological disease rather than a mental illness. However, its emotional and psychological impact can be profound—not only for the person diagnosed, but also for those caring beside them.

The video explores the importance of earlier diagnosis, including carers in decisions, recognising anticipatory grief and connecting families with appropriate support. It also highlights organisations such as Alzheimer’s Society, Dementia UK, Carers UK and Carers Trust.

Carers may manage appointments, medication, personal care, changing behaviour and difficult decisions, often without enough information or support for their own wellbeing.

World Alzheimer’s Day gives us an opportunity to challenge stigma, listen to people affected by dementia and recognise the contribution of unpaid carers.

Neither the person living with dementia nor the carer walking beside them should be forgotten.

#WorldAlzheimersDay #DementiaAwareness #UnpaidCarers #CarerSupport #ACaringMind

Making Time for Black Mental Health: Free Racial Trauma Seminar in Shoreditch

Think Tenacity Academy CIC is hosting another important Making Time for Black Mental Health event in London.

The free racial trauma seminar will take place on:

Wednesday 23 September 2026
3:00 pm–9:00 pm
Cottons Shoreditch, 321 Old Street, London EC1V 9LE

The event will provide a culturally informed space to explore racial trauma, mental health and wellbeing within Black communities. It will also create opportunities for people with lived experience, carers, professionals and community organisations to connect and learn from one another.

I attended a previous Making Time for Black Mental Health event and saw how valuable these community-led spaces can be. They enable conversations about race and mental health to take place in an environment where people feel understood, represented and supported.

As a lived experience Black mental health carer and advocate, I know that racial trauma can affect not only individuals but also families and unpaid carers. We need more culturally responsive spaces that recognise these experiences and make it easier to discuss mental health without fear, judgement or stigma.

The event is free to attend, but capacity is limited to approximately 45 places, so early booking is strongly recommended.

A related Racial Trauma Group Support event is also advertised for Thursday 1 October in Notting Hill.

Book your free place through Eventbrite

Find out more about Think Tenacity Academy CIC.

Help Shape Better Cancer Care for People with Learning Disabilities from Ethnic Minority Communities

By Matthew McKenzie – Chair of ethnic MH Carer forum / Chair of Cancer Carergiver group

I was recently sent information about an important cancer care project being led by Learning Disability England in partnership with the Race Equality Foundation which is funded by Macmillan Cancer Support.

The project aims to improve cancer care for people with learning disabilities from Black, Asian and minoritised ethnic communities. A working group is being established involving self-advocates, family members and friends who have experience of cancer.

As someone who regularly raises awareness of the experiences of cancer caregivers, I believe this is an important opportunity to ensure that people with lived experience help shape what better and more inclusive cancer care should look like.

About the project

People with learning disabilities can face considerable barriers when trying to access cancer screening, understand health information, communicate their symptoms or navigate treatment.

When race, culture, language and discrimination are added to the picture, those barriers can become even more complicated.

Family members and unpaid carers may play a vital role by:

  • Helping the person communicate their needs and preferences.
  • Supporting them to attend screening and hospital appointments.
  • Explaining information in an accessible and reassuring way.
  • Recognising changes in the person’s health or behaviour.
  • Advocating for reasonable adjustments.
  • Supporting the person before, during and after cancer treatment.

However, carers’ knowledge is not always recognised by healthcare professionals. Families may also have to navigate difficult conversations about consent, confidentiality, treatment choices and culturally appropriate support.

This is why the involvement of self-advocates and families must not be treated as an afterthought. Their experiences can help identify where cancer services work well, where people are being excluded and what needs to change.

Who can become involved?

Learning Disability England would like to hear from people from Black, Asian and minoritised ethnic communities who:

  • Have a learning disability and have experienced cancer.
  • Have attended cancer screening.
  • Have a family member who has experienced cancer.
  • Support a loved one with a learning disability who has experienced cancer.

The project is therefore open to different forms of cancer experience. Someone does not necessarily need to have received a cancer diagnosis themselves to have something valuable to contribute.

The working group will meet once a month, with most meetings taking place online. Participants will also be paid for their time.

Members of the group will help develop training and resources explaining what good cancer care should look like for people with learning disabilities from Black, Asian and minoritised ethnic backgrounds.

The importance of lived experience

Health services and organisations often develop resources for people without sufficiently involving the people who will actually use them.

Lived-experience involvement can help ensure that information is accessible, culturally responsive and based on the realities faced by patients and families.

It is also important that the voices of family carers are included alongside those of self-advocates. Carers may have witnessed difficulties in accessing screening, delays in diagnosis, poor communication or a failure to provide reasonable adjustments. They may also be able to highlight examples of compassionate and inclusive care that other services could learn from.

People with learning disabilities must remain at the centre of decisions about their own health and care. Proper involvement of family carers should strengthen the person’s voice rather than replace it.

How to express an interest

If you would like to learn more or are interested in joining the working group, please contact Annabelle Ferrari-Wood, the project coordinator:

Telephone: 07383 488 862
Email: annabelle.ferrari-wood@LDEngland.org.uk

You can also visit the Learning Disability England website.

Please consider sharing this opportunity with learning disability groups, cancer support organisations, carer centres, ethnic minority community groups and families who may have relevant experience.

Better cancer care cannot be designed without listening to the people most affected by it. This project provides an opportunity for self-advocates and family carers to help influence training and resources that could improve the experiences of many others.

Becoming a Human Book at the DUALITY Event – The Carer They Didn’t See

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.

I became a book.

More specifically, I became a Living Book as part of the event’s Human Library.

My title was:

The Carer They Didn’t See

And by the end of the evening, that title would take on another meaning I hadn’t expected.

What was the DUALITY event?

DUALITY brought together research, lived experience, creativity, photography, health and conversations about ageing and multiple long-term conditions.

What I particularly appreciated was the emphasis on people’s experiences rather than simply presenting research about people.

Throughout the event there were presentations, discussions, creative displays and opportunities for people to connect with one another.

I also ran the Carers UK Stall along with other things I use to raise unpaid carer awareness

Photography was also an important part of the project. Participants from different parts of the world had taken part in workshops exploring photography as a way of capturing support, people’s inner and outer worlds, ageing and multiple long-term conditions.

But one of the most interesting parts for me was the Human Library.

When people become books

The Human Library turns the idea of a conventional library on its head.

Instead of borrowing a book from a shelf, you borrow a person.

The organisers explained that the Human Library is intended to foster empathy, challenge prejudice and provide a safe space in which people can ask questions of someone they might not ordinarily meet. Visitors browse the available titles and then spend a short period listening to that person’s story and having a conversation with them.

There were several Living Books available, each representing very different experiences.

My book was called The Carer They Didn’t See.

My short description read:

“I was a carer nobody counted, until grief became words, and words became my way to say: we’re here, and we matter.”

That sentence says a great deal about why I continue campaigning around unpaid carers.

For years I supported my mother, who lived with serious mental illness. Like many unpaid carers, much of what I did happened quietly and behind closed doors.

There was no uniform.

There was no job title.

Often there wasn’t even recognition that I was a carer.

Yet the responsibility was very real.

Being “read”

Being a Living Book is quite different from giving a presentation.

When presenting at a conference, I usually have slides, a topic and a limited amount of time in which to make particular points.

The Human Library was much more personal.

Someone chooses your “book” because something about its title interests them. They sit with you, listen and can ask questions.

That creates a different kind of conversation.

It also made me think about how powerful lived experience can be when people are given the space not merely to tell their story, but to have somebody genuinely listen to it.

The organisers themselves acknowledged that hearing stories we would not normally encounter can sometimes be challenging and thanked the Living Books for making the time and space for those conversations.

For unpaid carers, I think that is particularly important.

We spend a great deal of time discussing services, policies, strategies and systems. Those things matter enormously.

But behind every carer statistic is a human story.

The photograph of an unseen carer

There was another part of the event that became especially significant for me.

I had also entered a photograph into the DUALITY community photography competition.

The photograph looks deceptively simple.

It shows my mother’s coat and shawl resting on a chair. My own chair sits partly outside the frame.

That positioning was deliberate.

My mother’s chair occupies the centre because she was the person receiving support. My own chair sits towards the edge because I wanted to represent something that many unpaid carers experience:

We are always there, but we are not always seen.

I also deliberately kept the ordinary home environment visible.

Caring doesn’t only happen in hospitals, clinics and professional environments.

A huge amount of caring happens quietly in people’s homes.

There may be no audience to see the difficult nights, the worry, advocacy, appointments, emotional support or constant vigilance.

But the carer is there.

When photography becomes lived experience

One thing I enjoyed about the photography project was learning that a powerful photograph doesn’t necessarily require expensive equipment or an elaborate setting.

The workshops explored techniques including framing, symbolic composition, symmetry, colour and other approaches to visual storytelling.

For me, however, the emotional meaning of the photograph mattered most.

The coat and shawl belonged to my mother.

The empty chair therefore represents much more than furniture.

It connects the photograph directly to my own experience of caring, bereavement and the work I now do to raise awareness of unpaid carers.

During the judging discussion, I was delighted to hear The Carer They Didn’t See specifically mentioned as one of the photographs demonstrating different dimensions of support.

I wasn’t expecting what happened next.

Winning the DUALITY Photography Competition

When the winners were announced, my name was called.

The Carer They Didn’t See had been selected as one of the winning entries.

I received a medal engraved:

WINNER
Matthew McKenzie
Duality Photo Competition
2026

I was very surprised.

I won a four-week personal training block with a coach at the King’s Sports and Wellness Centre in Waterloo.

For me, though, the most meaningful prize was the recognition of the story behind the photograph.

It meant that an image representing an unpaid carer’s experience had been noticed.

And perhaps there is some irony in that.

I created a photograph called The Carer They Didn’t See.

And people saw it.

Listening to other lived experiences

The evening was certainly not only about my own story.

One of the strengths of DUALITY was hearing from people with very different experiences.

There was discussion about musculoskeletal conditions, multiple long-term conditions, physical activity, persistent pain and the importance of taking a more holistic approach to people’s health.

I was particularly struck by the lived-experience discussion about fibromyalgia.

One speaker described how developing chronic pain changed her life and even affected her sense of identity. She spoke about a long and frustrating journey through healthcare before receiving a diagnosis, and about sometimes feeling that her symptoms were being questioned or invalidated.

She also described how movement and supported exercise helped her reconnect with her body, understand her limits and rebuild confidence.

One comment particularly fitted the wider theme of the evening: we often cannot see what another person is experiencing.

Invisible conditions and invisible caring have something important in common.

Culture, identity and memory

Another powerful part of the evening explored culture, memory and identity.

We heard personal reflections on growing up in London’s East End, experiences of racism, Caribbean heritage, family, music and the ways culture can become a source of strength and protection.

That fitted beautifully with the idea of DUALITY.

From grief into creativity

Since losing my mother, I have increasingly used writing, poetry, blogging and other creative approaches to explore my experiences of unpaid caring.

Creativity allows me to communicate things that sometimes don’t fit neatly into a presentation or policy document.

A photograph can do the same thing.

A chair.

A coat.

A shawl.

An empty space.

For somebody else, these may simply be everyday objects.

For me they contain memories of caring.

And when placed together within a frame, they say something about the millions of unpaid carers whose contribution can remain just outside society’s field of vision.

Recognition as a Living Book

I was also very grateful to receive a Certificate of Appreciation recognising my contribution as a Living Book at the DUALITY Human Library.

That certificate and the photography medal represent two quite different parts of the same day.

One recognises telling a story.

The other recognises showing a story.

Both were ultimately about lived experience.

The carer they finally saw

I left King’s College London thinking again about the title I had chosen:

The Carer They Didn’t See.

For many years, that description could have applied to me.

It could still apply to countless unpaid carers today.

They may be sitting beside someone in hospital.

They may be managing a crisis at home.

They may be trying to navigate mental health services.

They may be a son, daughter, parent, sibling, partner, friend or neighbour.

And sometimes they don’t even recognise themselves as carers.

Events such as DUALITY provide another way of making those experiences visible.

But people’s stories matter too.

I went to King’s College London expecting to share mine as a Human Book.

I didn’t expect to leave wearing a gold medal for a photograph inspired by that same caring journey.

Perhaps that is why the day meant so much to me.

For once, “The Carer They Didn’t See” was seen.

Suicide Prevention Awareness 2026: Remembering Unpaid Mental Health Carers

By Matthew McKenzie – Carer Activist

September is widely recognised as Suicide Prevention Awareness Month, with World Suicide Prevention Day taking place on 10 September.

Organised internationally by the International Association for Suicide Prevention and supported by the World Health Organization, the 2026 theme is “Changing the Narrative on Suicide,” with the call to action “Start the Conversation.”

Organisations such as Samaritans, PAPYRUS, Mind, Rethink Mental Illness and members of the National Suicide Prevention Alliance also work to raise awareness, challenge stigma and improve suicide prevention across the UK.

For this year’s campaign, I have produced a new awareness vlog focusing not only on people experiencing suicidal thoughts, but also on the unpaid mental health carers supporting them.

Relatives, partners and friends may spend long periods watching for warning signs, attending appointments and responding to crises. They can carry an enormous level of fear and responsibility, yet their own emotional needs are frequently overlooked.

Carers should never be expected to manage suicide risk alone. Professionals must listen to their concerns, involve them appropriately and ensure they can access support themselves.

In my new vlog, I discuss how we can challenge stigma, start compassionate conversations, listen without judgement and remember to check in with the person providing care as well as the person in crisis.

If you or someone you know needs urgent mental health support in England, call NHS 111 and select the mental health option. Samaritans can be contacted free, day or night, on 116 123. If someone is in immediate danger, call 999 or go to A&E.

Together, we can move from silence to conversation, from stigma to compassion, and from carers coping alone to communities sharing responsibility.