Tag Archives: lived experience

Can you help shape research into the experiences of partners affected by gynaecological cancer?

By Matthew McKenzie – Chair of Cancer Carer forum

I am pleased to share a research opportunity from Lara Pope, a Doctoral Clinical Psychology student at the University of Hertfordshire, who is looking to hear from partners of people who have experienced gynaecological cancer.

As someone who campaigns for greater recognition of unpaid carers and those supporting someone affected by cancer, I know that the experiences of partners can sometimes become overshadowed by the understandable focus on the person receiving treatment.

Yet partners can experience considerable emotional, practical and relationship changes of their own.

About the research

“Exploring partners’ experience of gynaecological cancer: An Interpretive Phenomenological Analysis.”

The research aims to better understand what it is like to be the partner of someone who has experienced gynaecological cancer, including how partners navigate their own needs, relationships, identity and intimacy.

Lara is particularly keen for the research to reach people whose voices can sometimes be less visible in research, including male partners, people from Global Majority communities and LGBTQ+ communities.

Who can take part?

You may be eligible if you:

  • Are aged 18 or over
  • Live in the UK
  • Speak English
  • Are the partner of someone diagnosed with gynaecological cancer at least 12 months ago

There are some additional eligibility considerations which Lara can discuss with anyone interested in participating.

What does taking part involve?

Participants will take part in an online semi-structured interview, providing an opportunity to talk about their experiences and perspectives as a partner.

The interview will last approximately 45–90 minutes.

Participants can choose either a £20 Love2Shop voucher or have £20 donated to one of three selected cancer charities in recognition of their participation.

The importance of the research

Cancer does not only affect the person receiving the diagnosis.

Partners may find themselves providing emotional support, attending appointments, managing additional responsibilities and trying to support the person they love while also dealing with their own fears and emotions.

Research that listens directly to partners can help improve understanding of these experiences and potentially inform recommendations for services, professionals and organisations supporting families affected by cancer.

Interested in taking part?

Please see the research recruitment poster accompanying this article, including the QR code for further information.

You can also contact the researcher directly:

Lara Pope
Doctoral Clinical Psychology Student
University of Hertfordshire
Email: lp24abe@herts.ac.uk

Why Black Carers Struggle to Access Mental Health Support

By Matthew McKenzie

Black unpaid carers can face significant barriers when trying to access mental health support for themselves or the person they care for.

These difficulties may include long waiting times, financial pressure, cultural stigma, fear of statutory services and a shortage of professionals who understand the effects of racism, racial trauma and culturally specific caring experiences.

In my new video, I examine how misdiagnosis, over-policing and expectations that Black families should simply remain “strong” can create mistrust and discourage carers from asking for help.

Drawing on my perspective as a Black lived-experience carer, I also consider what mental health services can do differently. Genuine improvement requires culturally responsive support, greater representation, safe spaces for carers, accessible community-led services and meaningful partnership with Black carers and families.

PCREF provides an important opportunity to challenge racial inequalities, but its success will depend on whether services listen to lived experience and turn commitments into visible action.

2nd Voices & Verses – PCREF Poetry Event

By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador

Cygnet PCREF Carer Lead & Carer Ambassador

On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.

The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services.

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PCREF poem by Matthew McKenzie – Racial Inequality in Mental Health

What does racial inequality in mental health really look like from the perspective of an unpaid carer?

In this powerful spoken-word poem, Matthew McKenzie explores the realities of racism, bias, exclusion, stigma, and unequal treatment experienced by many ethnic communities when accessing mental health services.

Through an A–R alphabet structure, this poem highlights why the Patient and Carer Race Equality Framework (PCREF) matters and why genuine cultural understanding, listening, and inclusion are essential to improving care.

This poem is part of my 100-poem PCREF collection, Unpaid, Unseen and Yet Unbroken, giving voice to the experiences of unpaid carers supporting relatives with mental illness while challenging racial inequalities across mental health services.

South London Mental Health Carers Forum Update – July 2026

By Matthew McKenzie – Chair of the South London MH carers forum

Another month has passed, and I would like to thank everyone who joined our South London Mental Health Carers Forum. It was fantastic to welcome carers, NHS professionals, voluntary sector organisations and local authority representatives from across South London to discuss issues affecting unpaid mental health carers.

As always, the forum provides a safe place where carers can raise concerns directly with decision makers, hear about new developments, share experiences and help shape improvements across mental health services.

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Research Opportunity: Calling Black Unpaid Carers Supporting Someone with a Learning Disability and Mental Health Needs

By Matthew McKenzie – Carers UK ambassador / Chair of National ethnic mental health carers forum

Are you a Black unpaid carer supporting a family member with a learning disability (sometimes referred to as an intellectual disability) who has experienced mental health difficulties?

Have you ever tried to access mental health support on their behalf? This could include contacting services such as Community Learning Disability Teams, CAMHS, Community Mental Health Teams, Talking Therapies or other mental health services.

If so, your experiences matter.

Lauren Heath, a second-year Trainee Clinical Psychologist at the University of Southampton, is conducting doctoral research exploring the experiences of Black carers who have accessed, or attempted to access, mental health support for a family member with a diagnosed learning disability.

We know that Black unpaid carers often face additional challenges when trying to navigate health and social care systems. Too often, their experiences are unheard or underrepresented in research. This study aims to better understand those experiences and help inform more culturally sensitive and inclusive services in the future.

You may be eligible to take part if you:

  • Identify as Black.
  • Have significant caring responsibilities for a family member with a diagnosed learning disability (or intellectual disability).
  • Have accessed, or attempted to access, mental health services on their behalf.

Taking part will involve:

  • A confidential interview lasting approximately 1.5 hours via Microsoft Teams.
  • Your responses will be anonymised once all interviews have been completed.
  • You will receive a voucher to thank you for your time and contribution.

Lauren previously worked within Community Learning Disability Teams across the UK and became interested in understanding why so few Black families appeared to be accessing these services. Her doctoral research hopes to amplify the voices of Black carers and contribute towards improving culturally sensitive support for families in the future.

If you think this research may apply to you, or someone you know, please consider taking part or sharing this opportunity within your networks.

To find out if you are eligible, you can complete the short questionnaire or contact Lauren directly at L.Heath@soton.ac.uk.

Your lived experience could help shape future services for Black families and carers.

National Ethnic mental health Carer Forum : June Update 2026

By Matthew McKenzie – Carer & Chair of the National Ethnic MH carer Forum

The June 2026 National Ethnic Mental Health Carer Forum brought together carers, NHS Trusts, researchers, voluntary organisations and mental health professionals from across England to discuss one shared ambition improving mental health services through genuine co-production with ethnic minority carers.

Matthew reminded delegates that carers develop expertise through lived experience. Supporting a family member with severe mental illness means navigating NHS services, social care, benefits systems and advocacy. These experiences provide knowledge that cannot be learned through textbooks alone.

Opening Presentation

Matthew McKenzie

The Importance of Co-production

Forum Chair Matthew McKenzie opened the meeting by welcoming carers and professionals from across England and reflecting on more than a decade of leading the National Ethnic Mental Health Carer Forum.

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Carers Week 2026 Round-Up

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.

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East Sussex Carers Voices – Celebrating Carers Week 2026

East Dean Village Hall – 11 June 2026

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.

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Advancing Race Equity Across London’s Mental Health Trusts

On Wednesday 3 June 2026, colleagues from all eight London Mental Health Trusts, alongside carers, service users, community organisations, researchers, regulators and system leaders, gathered at ISH Venues in central London for the Pan London Patient and Carer Race Equality Framework (PCREF) Conference.

Chaired by Erica deti from North East London NHS Foundation Trust (NELFT), the conference provided a unique opportunity to showcase progress, share learning and strengthen London’s collective commitment to race equity within mental health services.

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