Tag Archives: lived experience

Language as Comfort – A PCREF Poem About Language, Belonging and Being Understood

By Matthew McKenzie – 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 Language as Comfort.

This is Poem 30 and explores something that can easily be overlooked when we talk about involvement in mental health services: the comfort and belonging that can come from being able to communicate in your own language.

Watch the poem below.

For many ethnic minority carers, language is about much more than translating individual words. Our mother tongue can be connected to family, culture, identity, memory and a feeling of safety.

When language becomes part of carer inclusion

Language barriers can affect how confidently carers participate in assessments, consultations and discussions about the person they support.

This is why one part of the poem asks services to record a carer’s language needs:

A carer should not have to start again at every appointment, repeatedly explaining how they need information to be communicated.

This connects strongly with the Patient and Carer Race Equality Framework (PCREF). If we want meaningful involvement from diverse communities, we need to think about whether our usual ways of communicating actually enable people to participate.

The poem ends with the idea of language helping someone to “break free from this cage”.

For me, that is the central message of Language as Comfort. Being understood can create confidence. Being able to communicate can create involvement. And recognising someone’s language can help create a sense of belonging.

Language should not be another barrier between carers and mental health services.

It can instead become part of the bridge.

Poem 30 from the developing collection Unpaid, Unseen and Yet Unbroken: Poetry about Ethnic Mental Health Carers.

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.

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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.

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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.

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National Ethnic mental health Carer Forum : August Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

The August meeting of the National Ethnic Mental Health Carer Forum brought together unpaid carers, NHS leaders, healthcare professionals, academic researchers, and voluntary sector advocates from across the country. The session provided a vital space to address race equity, systemic racism, lived experience, and ongoing research into minoritised caring experiences.

Matthew McKenzie opened the meeting by welcoming attendees and reinforcing the core purpose of the national forum. He reflected on how the platform has grown into a crucial space where family carers can directly challenge health structures, influence decision-makers, and learn about national policy developments such as the Patient and Carer Race Equality Framework (PCREF). Matthew acknowledged that while discussions around institutional racism and health inequalities can be heavy and emotional, the forum remains a safe, respectful, and healing space dedicated to driving real, actionable change across the NHS.

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South West London Mental Health Carers Forum – August 2026 Update

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

The South West London Mental Health Carers Forum met again during August 2026, bringing together unpaid carers to share experiences, discuss how the forum is developing and look at ways we can strengthen the voice of carers across South West London.

The forum continues to be a peer-led space shaped by carers themselves. An important message from the August meeting was that this is a group for carers, run with carers and influenced by carers. Members spoke about wanting people who join the forum to feel recognised, valued and able to support one another, rather than the group becoming overly formal or service-led.

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National Cancer Caregiver Forum – August 2026 update

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.

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South London Mental Health Carers Forum – August 2026 Update

By Matthew McKenzie – Carer forum facilitator

On Monday 24 August, I facilitated another meeting of the South London Mental Health Carers Forum. The forum brings together unpaid carers and carer representatives from Lewisham, Lambeth, Southwark and Croydon, giving people a space to share experiences, learn about their rights and influence the development of local mental health services.

We welcomed carers with many different experiences, including parents supporting adult children with serious mental illness, autism and substance misuse, as well as people involved in advocacy, peer support, staff training and service development. Some members had been navigating the mental health system for many years, while others were newer to caring and looking for guidance.

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Gatekeeping Care – PCREF Poetry on Minority Ethnic Mental Health Carers

By Matthew McKenzie

My latest poetry video, “Gatekeeping Care,” explores the barriers minority ethnic unpaid carers can face when trying to navigate mental health services.

This is where unwritten rules, complicated medical language and unexplained carer rights can leave people struggling to understand how to obtain support.

Unpaid carers can also have their concerns not taken seriously.

The poem also reflects on what it feels like when decisions are made without carers and their cultural or religious beliefs are overlooked.

Through this poem, I want to raise awareness of why the Patient and Carer Race Equality Framework (PCREF) matters to carers and families.

I feel mental health services must listen to carers, communicate clearly and recognise them as equal partners rather than leaving them feeling judged, invisible or powerless.