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.
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.
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.
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
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.
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.
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.
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.
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.
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.
