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, 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.
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.
Dr Eiluned Pearce, a trainee clinical psychologist and researcher at the University of Oxford, is seeking help recruiting participants for an important study about unpaid carers’ wellbeing.
The study will explore whether attending social and community groups, including carer support groups, clubs and other group activities is associated with improved wellbeing among people supporting someone with a severe mental illness.
This is particularly relevant to what I promote at my site because many unpaid carers rely on peer groups and carer forums for understanding, information and a sense of connection. However, you do not need to attend any kind of group to participate. The researchers need to hear from carers who attend groups and those who do not.
Who can take part?
You may be eligible if you:
Are aged 18 or over
Live in the United Kingdom
Speak English fluently
Provide unpaid emotional or practical support to someone aged 16 or over
Support someone experiencing psychosis, bipolar disorder, an eating disorder, or complex emotional needs/personality disorder
Do not personally experience a severe mental illness
You do not have to describe yourself as a “carer” or “caregiver”. You might consider yourself a relative, partner, parent, sibling or friend who provides essential support.
What does participation involve?
Participants will complete an anonymous online survey lasting approximately 40 minutes. You can take breaks and return to it using the same internet browser, provided it is completed within one week of starting.
Questions will cover your wellbeing and mental health, the support you provide, its impact on you, any groups you attend and some information about your background.
Individual responses will not be shared outside the research team, and IP addresses will not be recorded.
Take part in the study
To read more about the research and access the survey, visit:
Research into carers’ wellbeing remains limited, and it is important that the experiences of people supporting someone with a severe mental illness are properly heard and understood.
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
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.
